Over 100 organisations have signed up to support the campaign for a Care Supporters Bill, known as Gloria’s Law, which would grant individuals in need of care the legal right to unrestricted, in-person support from at least one essential care supporter. The campaign, spearheaded by Rights for Residents, John’s Campaign, and Care Rights UK, was born out of the widespread suffering and trauma caused by enforced separations during the COVID-19 pandemic. However, the issue remains urgent today, as such separations continue to occur in both residential and hospital settings.
The campaign has garnered support from an impressive and diverse coalition of national and local charities, care groups, individual care homes, and support organisations. Together, these groups represent millions of people who have been directly affected by the separation of individuals from their loved ones in health and care settings.
The proposed bill would not only benefit care recipients and their families but also ease the pressure on hospitals and care homes. Essential care supporters play a vital role in providing both physical assistance—such as helping with meals, medication, and mobility—and emotional support. They act as interpreters, advocates, and memory-keepers, offering a lifeline to those in need. The bill is both a moral imperative and a practical solution to improve care standards.
Witness testimonies presented to the UK COVID Inquiry have underscored the devastating impact of separating people, when they are at their most vulnerable, from their loved ones. Martina Derry Ferguson, from Covid Bereaved Families for Justice, Northern Ireland, the final witness in the often-harrowing public hearings about impact in the hospital sector, delivered a powerful statement urging legislative change to ensure “nobody dies alone ever again.” Inquiry Chair Lady Hallett echoed this sentiment, emphasising the need for continued pressure to drive meaningful change.
The campaign has previously received written support from the Prime Minister, raising hopes that the government will act on this critical issue. Campaigners are now calling for swift action to enshrine the right to an essential care supporter in law, ensuring that no one faces the trauma of enforced isolation again.
RELEVANCE TO CURRENT POSITION
- In the current ‘Quadremic crisis’ in both health and social care we are hearing of patients in vulnerable situations being denied any one to accompany them in emergency departments, suffering through lack of advocacy and being forgotten in hospital corridors. We are hearing of care homes denying all access to visitors and to family carers due to a small number of a small number of residents with flu, for instance, despite the damage this inflicts on the wellbeing of individual residents.
- The previous government’s legal amendments (known as regulation 9A) are completely unable to address such cases once ‘exceptional circumstances’ are cited.
Here is one example, sent by a concerned daughter:
I was notified that my mum’s care home had been closed by the local infection control team due to a Flu outbreak. When I asked if they’d be facilitating safe visiting (in line with Reg 9a and DHSC guidance) such as wearing masks and limiting visiting to one person at a time for each resident, I was told that they could not allow that. A few days later I asked again if they would facilitate safe visiting. When I quoted CQC regulation 9A and stressed that my mum had a right to see her family I was told that they had 39 other residents to consider and could not take the risk. At this point just one member of staff was showing symptoms and only 5 residents had flu.
Due to a brain haemorrhage in 2012 my mum lost the use of her left side and is unable to walk. She can still communicate but suffers with memory problems and confusion. Visits from her family provide an essential, additional level of support that the staff simply cannot provide to her. Family presence is vital to ensure mum receives a good level of care, as the staff have little time to spend on an individual basis with residents. We assist mum at mealtimes, help with her personal care and provide comfort and reassurance that is vital to her well-being and quality of life. Our support is not optional, it’s an essential component of her care.
When the home eventually re-opened she’d lost weight and was even more withdrawn and depressed due to spending time alone in her room. I hope that in the future, blanket bans on visiting can be stopped and every care home resident will be allowed to nominate at least one essential care supporter, to be allowed into the home in any circumstance, at their own risk, following the same precautions as staff.
Rachel Power, CEO of The Patients Association said ‘Care supporters are not just visitors, but essential partners in patient care. Their presence improves health outcomes, reduces anxiety, and helps ensure patients’ wishes are respected. Gloria’s Law would transform this from best practice to a guaranteed right.
Usha Grieve, Director of Partnerships and Services, Compassion in Dying said ‘At Compassion in Dying, the people we support tell us that despite best efforts to engage in decisions about medical treatment for loved ones who lack capacity, family and friends are often not invited to participate meaningfully in this process. This can mean people are given treatments they would not have wanted and loved ones tell us they feel guilty that they are not able to successfully advocate for the person they care deeply about. The impact is often significant and leaves a lasting mark on the lives of the people affected. Gloria’s Law would be a crucial step in ensuring the people who know someone best can offer vital support and advocacy when it is needed most.’
The Campaign Organisers said ‘There’s no prescription for loneliness. The harrowing experience of separation, shared by so many during the pandemic, continue. Significant gaps in our health and care system, that were highlighted by the pandemic, remain. Especially regarding the rights of individuals to be supported by their loved ones. We shouldn’t have to fight for this basic right. Whatever’s happening in the world outside, when we’re in a health or care setting, we should be guaranteed the support of the person that knows us best. Gloria’s Law would ensure that someone we love and trust could always advocate for us when we’re receiving care or treatment.’
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