Human rights must lead crisis response for people in health and care

Baroness Hallett, the UK Covid-19 Inquiry chair, has published her report from Module 3: Healthcare.  

The report has found what is known to many, that healthcare systems were placed under intolerable strain, as were the people using them. The report emphasises how overwhelmed the NHS was, suggesting it only just coped. We saw the impact of this manifest in immense suffering for older people receiving care and their loved ones. 

Support of loved ones 

The report found that visiting restrictions left patients such as those living with dementia or a learning disability, without essential support when attending medical appointments or receiving care. It also found that distinctions should be made between visits that may bring benefit but aren’t essential, and those from partners in care, which should be facilitated unless absolutely impossible. This was a key theme in our evidence for this module, represented by Julia Jones from John’s Campaign, as part of our Core Participant group, alongside The Patients Association.  

The report identifies that since the pandemic, Regulation 9A has been brought in to address this. We want to emphasise that though this is an important step, it is not enough to protect people today, or in a future crisis, because Regulation 9A: 

• is not framed as a right for the person, rather a duty on the health/care providers 

• is contained in secondary legislation, which leaves it vulnerable to being overridden in exceptional circumstances like a pandemic 

• cannot be enforced by individuals, but relies on monitoring by the regulator which has been found to be lacking  

The day before the Covid-19 report was published, the Government published their own report on the impact of Regulation 9A which set out serious flaws in its operation and enforcement. Ministers are now exploring proposals for legal changes to promote the importance of family and carers as equal partners in care. We have long been calling (alongside our campaign partners) for a new legal right to a Care Supporter – a trusted loved one to act as our eyes, ears or voice when we need them. We will be working with the Government to ensure these vital protections are enshrined in law.   

End-of-life 

The Covid-19 report also addressed other key issues, identifying the need for discussions about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices and advance care planning to be personalised and planned in advance of end-of-life care or crisis events. We saw the impact of lack of personalised care resulting in biases against a number of marginalised groups such as older and disabled people, with the report documenting the dangerous consequences of systematic exclusion of these groups. 

Discharge from hospital 

We are also glad to see recognition of the impact of delayed discharge. Delayed discharges can be seriously detrimental for older people, longer stays in hospital can lead to poorer health outcomes and can increase their long-term care needs. (The impact of discharge from hospital into care settings is being examined in the module on the care sector.)

Inquiry recommendations 

The Inquiry recommendations include: 

• Increasing capacity in urgent and emergency care 

• Publishing guidance on visiting restrictions in hospitals in the event of a future pandemic 

• Strengthening the body responsible for infection prevention and control guidance 

• Improving data collection 

• Promoting a standardised process and documentation for advance care planning 

• Increasing support for healthcare workers 

• Publishing guidance to assist decision-makers 

People not systems 

There should have been a greater focus in the report on the people health systems exist to support. One of the key mistakes in the management of the pandemic was the focus on systems over people. Lessons should have been learnt rather than maintaining this focus on systems in the Inquiry.   

Also lacking is a focus on people’s legal rights. Our human rights laws were born out of crisis and could have helped us to manage this one. We had urged the Inquiry to focus on how to embed person-centred, rights-based approaches across health and care to prevent the mistakes of the pandemic ever happening again. This is a missed opportunity in the report and its recommendations.    

Helen Wildbore, CEO, of Care Rights UK said: 

"Throughout the pandemic our advice line heard of the devastating impact as the health of older people in care deteriorated. The lack of access to healthcare, inadequate support at end-of-life and isolation from loved ones caused untold suffering and hastened deaths. 

"People’s fundamental rights to life, dignity and wellbeing were breached as laws designed to protect us were sidelined and ignored. The focus must be on ensuring decisions in times of crisis uphold people's human rights, protect equality, and support person-centred care so that this unnecessary suffering never happens again." 

Find out more about our evidence to the Covid Inquiry.