Campaigners Fear Government Backtracking On Care Supporter Bill
Liz Kendall and Rights for Residents campaigners
4 min read
Labour pledged in its manifesto to introduce a right for those in care to see their loved ones – but campaigners fear the government is backtracking. Sophie Church reports
“Mum asked the staff numerous times a day, on a loop, whether anyone had seen her daughters and why had we stopped coming to see her.
“On one rare occasion when mum did speak at the window, she put her finger to her lips to shush us, as she said repeatedly that the ‘guards would come’. Mum literally thought she was living in a prison.”
When her mother Jean went into full-time care, Jenny Morrison would visit almost every day. Jean had dementia, and while verbal communication was difficult, Jenny would play her music, read her poetry, do her hair and nails or just hold her hand.
But when the pandemic hit, this contact was completely cut off. Jenny’s mother rapidly deteriorated – she became withdrawn, rarely lifting her head and crying often. In just a few weeks, she could no longer speak or feed herself.
In August 2021, Jean died. The memories of this period have left the family traumatised and burdened by a guilt difficult to define – one they feel should rightly belong to the state.
Now, Jenny is one of many campaigners looking to introduce a ‘Care Supporter Bill’ to give everyone in the UK a legal right to a care supporter. This person – a family member or friend perhaps – would advocate for the person’s best interests in health and care settings.
The campaign to introduce the bill – also known as Gloria’s Law, named after West End actress Ruthie Henshall’s mother who died in a care home during the pandemic – has been co-led by Care Rights UK, Rights for Residents and John’s Campaign since 2021.
Before the election, Keir Starmer wrote a letter to Rights for Residents seen by The House pledging to introduce a care supporter as a legal right. He wrote: “Please do rest assured that the Labour Party I lead is committed to working with you to remove any barriers there are to enshrining this right.”
Labour also pledged to “guarantee the rights of those in residential care to be able to see their families” in its manifesto.
However, in April, the government launched a review of the Care Quality Commission’s (CQC) Regulation 9A – secondary legislation that governs visiting and accompanying in care homes, hospitals and hospices.
Campaigners fear the government is now backing down from introducing a care supporter as a legal right in favour of tweaking this regulation instead.
Lauren Byrne, policy and campaigns lead at Care Rights UK, says the regulation is “only secondary legislation, so isn’t a legal right for the person, and is to be monitored by the CQC rather than an individual’s right”. This means it is “not protected in law in the same way that Gloria’s Law would be”.
“We already hear from people on the regular who reference 9A through care providers, and they say that they’re aware of that regulation, but not going to comply with it because it isn’t primary legislation,” she adds.
Julia Jones, co-founder of John’s Campaign, which is arguing for a care supporter in any care setting, highlights that many health professionals have “never heard” of the regulation. She also says it only protects those in care homes, hospitals and hospice care – not mental health units.
“There’s a difference between providers knowing that there’s a regulation and perhaps the more savvy of the patients or the members of the public knowing there’s a regulation, and just every Tom, Dick and Harry knowing they have a right,” she says.
While Gloria’s Law has the support of cross-party MPs – the Conservative Party’s Dr Caroline Johnson, Labour’s Dan Carden and Plaid Cymru’s Liz Saville Roberts are said to have been particularly steadfast – campaigners are now waiting to see whether the government will keep to its word.
The Department of Health and Social Care did not provide a comment when approached. The House understands that the government will consider next steps once the review into the CQC regulation has concluded in the autumn.
