John’s Campaign, Care Rights UK and the Patients Association respond to Covid Inquiry Module 6 report

The three organisations were Core Participants in Module 6 of Baroness Hallett’s Inquiry, which examined the impact of the pandemic on the adult social care sector across the UK, including care homes, home care, unpaid carers and the people who rely on care services.

The report concluded that the care sector received insufficient protection at the time it most needed it, and that protecting adult social care appeared to be an "afterthought" as the government prioritised protecting hospitals. It found that there was no "protective ring around care homes" at the start of the pandemic and that significant action to protect the sector was lacking for too long.

The Inquiry identified failures in pre-pandemic planning, inadequate preparation for the specific needs of the adult social care sector, and guidance that did not reflect the realities of providing care to people with complex needs. The report also highlights the consequences of gaps in data, insufficient support for unpaid carers and the suspension of routine in-person inspections, which reduced oversight of care settings and increased the risk of safeguarding concerns and poor practice going undetected.

The Inquiry recorded key concerns raised by Care Rights UK, John’s Campaign and the Patients Association that the Care Quality Commission had abdicated its responsibility for oversight of the sector during the pandemic.

The report also examined the devastating consequences of restrictions on visiting. It found that the strictness and duration of restrictions caused enormous harm to residents and their loved ones, often resulting in significant deterioration in residents’ physical and mental health and wellbeing. The Inquiry recognised that, as the pandemic progressed, the harms caused by the absence of visits outweighed the potential risks of infection for many people.

The Inquiry recognised that visits from loved ones are not simply a source of comfort, but an essential part of care that sustains physical and mental wellbeing and can help slow cognitive and physical decline. It acknowledges that family members often provide essential care and that their role should have been recognised and access established sooner. The report also records the experiences of residents and relatives who described care homes becoming like prisons.

Among its recommendations, the Inquiry says that people living in care homes should have the right to in-person visitors, except in the most grave or exceptional circumstances. Restrictions should be the least restrictive possible, both in severity and duration. Essential carers should be treated separately from general visitors and their visits maintained during future pandemics unless circumstances make this impossible or the risk is too great.

The Inquiry also calls for arrangements to maintain inspections during emergencies and better data collection. The organisations welcome the report’s recognition of the importance of access to care settings but consider that more needs to be done to ensure that people’s dignity, autonomy and relationships are protected in future. They emphasise that guidance alone is insufficient to guarantee that people receiving care can remain connected to those who matter most to them.

Following the Inquiry’s earlier report on healthcare, Module 3, the organisations wrote to the Inquiry to highlight significant limitations in Regulation 9A of the Health and Social Care Act 2008 Regulated Activities Regulations, which had been described as already providing a right to visits in certain care settings. The organisations raised concerns that the regulation did not apply across all care settings, lacked effective enforcement mechanisms and was not consistently understood or implemented. In its Module 6 report, the Inquiry acknowledges that Regulation 9A is a "welcome first step" but requires further work.

The report also highlights serious shortcomings in end-of-life care during the pandemic, including inadequate training and support for the workforce, difficulties accessing medication and the burden placed on unpaid carers and families. It records evidence of inappropriate attempts to establish do-not-attempt-cardiopulmonary-resuscitation (DNACPR) decisions, including the experience of Susan Lyons, a member of the Core Participant group, who received letters from a GP concerning CPR preferences for her daughter, Sarah, who was in her twenties and has learning difficulties and did not agree to a DNACPR decision.

The Inquiry emphasised that people approaching the end of their lives are entitled to dignity in death and that their loved ones should be able to know they received the best possible care. It recommends mandatory end-of-life care training for health and social care professionals working with people in adult social care.

The three organisations say the findings must lead to meaningful action to ensure that the rights, wishes and individual circumstances of people receiving care are central to decisions during future public health emergencies. They are calling for legal protections that recognise people receiving care as adults with the right to make decisions about their own lives, including who should support them in their time of greatest need.

The Core Participants were represented by Leigh Day Solicitors Carolin Ott and Emma Jones who instructed Counsel Adam Straw KC of Doughty Street Chambers and Jessica Jones and Emma Foubister of Matrix Chambers.

Leigh Day solicitor Carolin Ott who represented Core Participants John’s Campaign, Care Rights UK and the Patients Association together with Leigh Day partner Emma Jones said:

"Our clients welcome the Inquiry’s findings that restrictions on access by people relying on care to professionals and loves ones were ‘catastrophic’, caused ‘incalculable harm’ and ‘resulted in a significant decline in both their health and wellbeing’, especially for those with cognitive conditions such as dementia. The recognition that for many the harms caused by the absence of access outweighed the potential risks of infection is crucial and must translate into concrete action by the government now to ensure that people relying on care have a right to nominate a partner in care whose continued presence is always facilitated and supported."

Helen Wildbore, CEO of Care Rights UK who oral evidence to the Inquiry on behalf of the three organisations, said:

"The devastating impact of isolation of people in care settings has been laid bare in Baroness Hallett’s report. We welcome the recommendation by the Inquiry that people relying on care ‘should have the right to in-person visitors’. An amendment to the Health Bill is passing through Parliament to introduce the right to a ‘Health and Care Partner’ across health and care settings. We encourage the government to take forward this amendment in order to implement one of the Inquiry’s recommendations immediately. People relying on care services should never again be an ‘afterthought’."

Rachel Power from the Patients Association said:

"Everyone deserves to be treated with dignity and compassion at the end of their life, and families should be able to be with their loved ones as they approach death, except in truly exceptional circumstances. We do not believe the restrictions imposed during the pandemic met that threshold.

"End-of-life care is about more than clinical care. It is about recognising the needs of the person who is dying, supporting those closest to them and ensuring their final moments are marked by dignity, compassion and humanity. The way someone dies can leave a lasting impression on their loved ones, and we have a responsibility to make those memories as positive as possible in circumstances that are already incredibly painful.

"Staff must be properly equipped to provide this care. Relying on mandatory training alone risks this important skill becoming a tick-box exercise. We need a deeper commitment to developing the skills, understanding and compassion required to support people at the end of their lives, and the families who are facing the loss of someone they love. This must be embedded in the culture of care, not treated as a one-off training requirement."

Julia Jones from John’s Campaign said:

"Although there is much to welcome in this report, particularly its recognition of the lasting human damage caused by isolating people from those who matter to them most, too much of the language used fails to recognise that people relying on health and care services - however ill or disabled they may be - are adult citizens who should retain the responsibility to make their own decisions about the people they consider essential to their well-being. Guidance on limiting visiting is not enough on its own. Individuals relying on health and care services must have the right to be supported by the person they have chosen in their time of greatest need and this should be enshrined in law."