Covid Inquiry to hear “harrowing tales” of people’s experiences of healthcare during pandemic

The three organisations are Core Participants in Baroness Hallett’s Inquiry as she investigates the impact of the pandemic on healthcare systems across the UK.  

Represented by the human rights team at law firm Leigh Day, this Core Participant group aims to ensure that the voices of people needing healthcare, their loved ones and carers are fully heard.

All three organisations were in direct contact with patients and carers through the pandemic period. The group say they have some “harrowing tales” to tell as well as survey evidence of the damage done and the need for future change.  

Julia will give evidence highlighting the need to prioritise people over institutions and consider individual needs over “wholesale edicts”. John’s Campaign, Care Rights UK and the Patients Association are concerned about reduced access to healthcare, the erosion of patient partnership and the damage to individual human rights.  

The Core Participants group focuses particularly, but not exclusively, on those patients rendered additionally vulnerable by disability - especially cognitive impairments - by age, or by complex and rare conditions. In the words of the Patients Association, “those who needed the most very often got the least.”

The group also has a concern for people whose first language is not English, for people experiencing mental health conditions and for those already approaching the end of their life. 

The group say many people’s human needs, individual choices and legal rights were disregarded; that they were not protected from harm and were placed at a significant disadvantage to the rest of the population. In many cases, existing health conditions were worsened, sometimes to the point of hastening the patient’s death.  

The group also share the voices of family carers, whose value to the economy has been calculated to outweigh the entire NHS budget. Their value to the individuals who they support is inestimable. The group say the failure to recognise their importance during the pandemic period was “deeply damaging and entirely avoidable”. They welcome this opportunity to try to ensure that lessons are learned for the future. 

Some of the key recommendations that John’s Campaign, Care Rights UK and the Patients Association therefore wish to ask the Inquiry to make are:  

• To reaffirm the centrality of human rights and equality legislation and other key laws on care and mental capacity in times of national emergency.
• To recommend a new legal right for individuals in health or care institutions to the support of whoever matters most to them.
• To highlight the importance of patient partnership and listening to the voices of those who will be most directly impacted by new regulations.

John’s Campaign, Care Rights UK and the Patients Association are also represented as Core Participants in Covid Inquiry Module 6, which will investigate the impact of the pandemic on the publicly and privately funded adult social care sector across the UK.

Both John’s Campaign and Care Rights UK have also been represented as Core Participants at Module 2B, which concluded earlier this year in Wales, examining decision making of key groups and individuals in the Welsh Government.

John’s Campaign, led by Julia Jones and Nicci Gerrard, works across the UK to assert the importance of people, particularly those living with dementia, having the right to be supported by their family carers when in health and care settings. This is also a right for family carers to continue their support.  

Throughout the Covid-19 pandemic, John’s Campaign waged a legal campaign for the rights of family members to visit and be involved in the care of their loved ones in care homes. Represented by Tessa Gregory and Carolin Ott, they convinced the Department of Health and Social Care (DHSC) to change guidance on visiting restrictions in care homes in line with human rights laws.  

Care Rights UK focuses on promoting the rights of people drawing on care. The charity runs a national, specialist advice line for expert advice on care issues for older people and their relatives and friends. It is calling, alongside John’s Campaign and Rights For Residents, for a new legal right to a Care Supporter to ensure no one is ever again isolated from the essential support of relatives or friends in health and care settings.

Care Rights UK supported John’s Campaign in its legal campaign which included two applications to the High Court which were withdrawn after guidance was changed.  

During the pandemic, the Patients Association monitored the experiences of patients, including with regular surveys which gave it insight to inform evidence to the Covid Inquiry. It has warned that the health emergency disrupted the relationship between patients and the NHS, and has raised concerns about the long-term consequences for patients.

The Core Participant group are represented by Emma Jones, Carolin Ott and Tessa Gregory of Leigh Day who have instructed David Wolfe KC, Jessica Jones and Emma Foubister of Matrix Chambers.  

Julia Jones of John’s Campaign 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.”

Helen Wildbore of Care Rights UK said: 

“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 learnt because, as one relative emphasised, this should never be allowed to happen to anyone else ever again.”

Rachel Power of the Patients Association said:  

“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."

Human Rights solicitor Carolin Ott who together with Emma Jones represents the John’s Campaign Core Participant group said:

"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." 

The full video of Julia's contribution to the M3 hearing is available to view here: