Covid inquiry to spotlight healthcare struggles

Today, Tuesday, October 29, 2024, Julia Jones of John’s Campaign is set to testify in Module 3 of the UK Covid-19 Inquiry, which explores pandemic-era healthcare struggles. Representing John’s Campaign, Care Rights UK, and the Patients Association, Jones will share how patients and caregivers faced what the organisations call “harrowing tales” of denied care and human rights violations.

The group, represented by Leigh Day’s human rights team, includes patients and carers as Core Participants, working to ensure their stories are heard by Inquiry Chair Baroness Hallett. These organisations aim to highlight the human impact of pandemic policies on the most vulnerable, including older adults, people with disabilities, non-native English speakers, and those near end of life.

Background and Evidence

John’s Campaign, which advocates for dementia patients’ right to family support in care, joined Care Rights UK and the Patients Association to collect testimonies and data throughout the pandemic. Many patients, they report, were “disadvantaged” as access to vital healthcare services became limited or nonexistent.

Julia Jones, speaking about her testimony, said, “It’s an honour and a responsibility to be given the chance to speak for those who were too often voiceless during the pandemic period and on whom the Infection Prevention and Control regulations had the gravest impact. The Inquiry has already shown that it is interested in hearing the voices of ordinary people, and I’d like to thank Baroness Hallett and her team for this opportunity.”

The evidence highlights how government restrictions isolated patients, leaving those with cognitive impairments, complex conditions, or terminal illnesses without the essential support of family caregivers. This isolation, they argue, was deeply damaging and often avoidable. Survey data shows that the neglect of patient and carer needs not only compromised health but worsened existing conditions, sometimes hastening death.

Helen Wildbore, Director of Care Rights UK, voiced similar concerns: “Throughout the pandemic, we heard the devastating impact of lack of access to healthcare, particularly for older people living in care. Whether it was being denied access to hospital, being unable to see a GP, or access palliative care, the harm caused is difficult to overstate. For family members, the trauma of being stripped of their caring role as their loved one’s health deteriorated will last a lifetime. We are determined that their voices and experiences will be heard, and lessons learned because, as one relative emphasised, this should never be allowed to happen to anyone else ever again.”

The Core Participant group also argues that the health emergency disrupted patient and NHS relationships. Their experiences indicate that sidelining family caregivers not only harmed patients but violated fundamental human rights.

Rachel Power, CEO of the Patients Association, remarked on the wide-ranging effects: “Throughout the pandemic, we witnessed firsthand how many patients, particularly those with complex needs, faced unprecedented challenges in accessing healthcare and maintaining their rights. Our survey data revealed the deep impact of disrupted care pathways and reduced access to services. This Inquiry represents a crucial opportunity to ensure that future crisis responses better protect patient rights and maintain essential partnerships between healthcare providers, patients, and their support networks. We must learn from these experiences to build a more resilient and patient-centered healthcare system that never loses sight of individual needs, even in times of national emergency.”

Calls for Change

To avoid similar issues in future crises, the organisations have proposed several recommendations to the Inquiry. Among these, they urge the Inquiry to reaffirm the importance of human rights and equality laws, particularly in healthcare settings during national emergencies. Additionally, they propose a new legal right allowing patients in healthcare settings to have support from their chosen family or caregivers, maintaining essential personal connections.

Carolin Ott, a human rights solicitor with Leigh Day representing the group, emphasised the need for reform: “The voices of those who needed healthcare, their loved ones, and carers must be central to the Covid Inquiry’s examination of the pandemic’s impact on healthcare provision and decision-making. The exclusion of family carers during the pandemic was not only devastating but also a breach of fundamental human rights. This Inquiry provides an important opportunity to scrutinise these decisions and ensure lessons are learned, so that the rights of those needing care and those who support them are never disregarded again.”

John’s Campaign, Care Rights UK, and the Patients Association are also set to contribute to Modules 6 and 2B of the Covid Inquiry, which focus on the pandemic’s effects on social care and Welsh government responses, respectively. As the organisations emphasise, addressing the rights of patients and carers is vital to building a healthcare system resilient enough to uphold individual needs, even in crises.