COVID-19 inquiry hears harrowing tales of people’s experiences of healthcare during pandemic
On 28/10/24, Julia Jones gave evidence to Module 3 of the UK Covid-19 Inquiry on Tuesday 29 October 2024 on behalf of John’s Campaign, Care Rights UK and the Patients Association.
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. We heard harrowing tales and collected survey evidence of the damage done and the need for future change.
Julia’s evidence highlighted 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 failure to recognise their importance during the pandemic period was deeply damaging and entirely avoidable. We 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 asked 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.
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.”
You can watch Julia present her evidence here.