Written evidence from The Relatives and Residents Association (HCS0048)

 

 

R&RA

The Relatives & Residents Association (R&RA) champions the rights of older people needing care in England. We provide information, advice and support to empower older people and their families/friends, and use their unique perspective to raise awareness and to influence policy and practice.

 

Introduction

R&RA welcome this inquiry and the opportunity to outline how the rights of older people using care are at risk. Older people in care are facing the most catastrophic and sustained attack on their human rights we’ve ever seen. Their fundamental rights to life and wellbeing were neglected at the outset of the pandemic. Twenty months later rights continue to be breached and people in care face discrimination as the only group still living under stringent Government restrictions whilst the rest of the country gets back to normal. Older people have been failed by the very systems designed to protect their rights. Too many are afraid to speak out and use their legal rights due to the power imbalances built into the system. This has to change.

 

R&RA’s campaign to End Isolation In Care has been calling for urgent action to end this human rights crisis, including an overhaul of Government guidance on visiting and for CQC to take action to monitor compliance. Our helpline hears the devastating impact measures to manage the pandemic have had on the lives of older people. Families tell us they can’t face another winter of these restrictions, and that they worry how long their loved ones have left. Key concerns coming through our helpline are of closed cultures taking hold, and of legal rights being overlooked in favour of non-statutory guidance.

 

Whilst COVID-19 has created unprecedented challenges and the sector is facing its most difficult period, the pandemic has also exposed or exacerbated many pre-existing problems. It has placed strains on a sector consistently overlooked and neglected. Staffing problems are not new, but have now reached crisis point. We are extremely concerned that a ‘perfect storm’ is brewing which is putting people’s safety, dignity and other rights at risk and that this is going unnoticed, behind closed doors.

 

Urgent action is now needed to end the human rights crisis in care and build in stronger protections to the system to ensure that older people can enjoy not only the minimum safeguards human rights laws offer but also a good quality of life.

 

Human rights issues

Inquiry Question: What human rights issues need to be addressed in care settings in England, beyond the immediate concerns arising from the Covid-19 pandemic?

 

We have set out below some issues under key rights protected by the Human Rights Act (HRA). Many of these issues have been made worse by the pandemic and measures taken to manage it – particularly the lack of access to relatives/friends. Our helpline hears daily from families being refused essential caregiver status as set out in Government guidance, facing illogical, nonsensical rules, cycles of perpetual lockdown, even struggling to get access at the end of life. Given the scope of this inquiry we have not addressed this issue in detail and have focused on the wider picture of human rights at risk, prior to the pandemic too. Our submission builds on the previous evidence sent to the Committee during its inquiry into the Government’s response to the pandemic.

 

Right to life

 

When a woman’s health significantly declined after moving into a care home, her social worker refused to review the care or discuss the visiting restrictions with care staff. Instead, the social worker said ‘that’s what happens with dementia’. [Example from anonymous helpline client]

 

Right to be free from inhuman/degrading treatment

 

A son became concerned about his father’s care after noticing he was not always getting his medication or appropriate diet, was becoming depressed and had a poor quality of life. R&RA supported the son to secure a review of his father’s needs and he was moved to a more appropriate setting. [Example from anonymous helpline client]

 

 

A care home resident was found in distress by their relative, left unchanged with faeces also over the bedding and on the walls. [Example from anonymous helpline client]

 

 

A care home resident’s toothbrush was found to have faeces on by their relative. [Example from anonymous helpline client]

 

Right to liberty

 

A care home resident was placed in care without their consent and has been unable to return home, despite saying for months they wish to do so. [Example from anonymous helpline client]

 

Right to private life (privacy, wellbeing, autonomy)

 

A care user was found by a relative to have missing teeth and others in a bad state of repair which staff had not noticed. [Example from anonymous helpline client]

 

 

A care home resident was found by a relative to be dressed in another resident’s clothes and other items of clothing were missing, despite being labelled. [Example from anonymous helpline client]

 

 

A care user’s medication was changed without consultation with their relative and they were placed on medication they had previously had a bad reaction to. [Example from anonymous helpline client]

 

 

Right to family life

 

“I am quite sure that preventing relatives from entering for so long has led to a serious drop in standards. Since April 2020 I have made numerous complaints to my wife’s care provider over issues I detected in Facetime calls including poor diet, no oral care whatsoever, being left in bed until lunchtime, and so on.” Robert, whose wife is affected by dementia

 

 

“My knowledge of mom’s wishes has been removed from consideration. The effect of current practices makes my role as her guardian of her needs, desires and wants impossible. My ability to monitor mom’s rights has been eroded in favour of ease and lack of scrutiny.” Son who can only visit 30mins in a visiting room which is distressing for his mum.

 

 

A man was accused of verbally abusing staff for raising concerns about his mother-in-law’s care and banned for over a year until able to access the LGO to successfully challenge the accusations. [Example from anonymous helpline client]

 

 

Mr Baker was discharged from hospital into a different care home miles from his wife, without consultation with her. R&RA supported Mr and Mrs Baker to successfully challenge the placement. [Example from helpline client]

 

 

A local authority decided to place a woman in a different care home to her husband, seemingly oblivious to the great distress this was causing. [Example from anonymous helpline client]

 

Right to respect for home

 

I shall never quite recover from the shock of being told my home was to be taken away. This was the place where, at 92, I had expected to spend the rest of my life. I was in shock for many days, even weeks, not sleeping, feeling unsteady and as if a pit had opened at my feet. My friends are scattered and my feeling of security gone. I still cannot absorb the fact that such an action against us was allowed to happen.” Resident whose care home was closed

 

“During the eight months since the eviction notice my mother has markedly deteriorated, both mentally and physically. She went into a depression after her eviction. She has become very frail and forgetful and is prone to falling. I do not want to live in a society where the vulnerable can be treated in this way.” Daughter of evicted care home resident

 

 

A relative who complained to the care home about her mother being refused an essential caregiver (in line with Government guidance) was told the home may no longer be able to meet her mother’s needs and to find a new home. [Example from anonymous helpline client]

 

Right to be free from discrimination 

 

The loss of a resident’s hearing aids was left unreported and not acted upon by staff until raised by a relative. [Example from anonymous helpline client]

 

 

Service providers

Inquiry Question: How effective are providers at respecting the human rights of people under their care?

 

Lack of knowledge of rights 

There is a widespread lack of knowledge of human rights amongst care providers. This is due to a lack of training on human rights, the HRA and other laws which protect rights (including the Mental Capacity Act and Equality Act). This leads to care users’ rights not being respected or protected. It also means one of the stated aims of the HRA, to create a culture of respect for rights, has not taken place in care settings. The Government seem unaware of this knowledge gap, making references to the HRA and Equality Act in guidance for providers during the pandemic with little recognition of the lack of knowledge of these laws amongst care workers.

 

 

Strains on the sector 

Providers’ ability to respect the rights of care users is further hampered by long-standing strains on the sector, which have now reached crisis point. The high turnover of staff has long been a problem and leads to lack of consistency and relationship-building between staff and care users. Both are crucial to delivering a rights-respecting service, which at its heart is about knowing the person’s needs and wishes. Our helpline hears that staff shortages are preventing delivery of dignified care – helpline clients are being told that providers can only do the bare minimum. This is very far from the culture of respect for human rights older people should be able to expect from care services. We are concerned that the staffing crisis in care is putting people’s safety, dignity and other rights at risk and that this is going unnoticed, behind closed doors.

 

 

The regulator

Inquiry Question: How effective are regulators in protecting residents from human rights breaches and in supporting patients and residents who make complaints about their care provider?

 

Failure to protect the rights of residents

When older people needed their regulator the most during the pandemic, CQC retreated to the side-lines. CQC have borne witness to a human rights crisis unfolding in care and their lack of action has left older people at risk. Stopping routine inspections left people without protection when they needed it most. Their voice has been lacking throughout the pandemic as decisions which had catastrophic consequences for older people in care were left unchallenged and mistakes repeated, including:

 

R&RA wrote two letters to CQC, in May 2020 and May 2021, expressing our disappointment with the role they have taken during the pandemic, urging them to act to protect the rights of people using care. We called on them to take a proactive role in monitoring compliance with the visiting guidance. Their response was an unacceptable abdication of responsibility. It is deeply troubling that we simply do not know how many people’s rights are at risk or being breached by lack of compliance with visiting guidance. It was, therefore, of enormous concern and distress to our beneficiaries for the CQC to have reported to this Committee earlier this year that they see no problem with the implementation of the guidance whilst admitting that they do not collect data to justify this assertion. It is unacceptable that it should fall to families to fill this gap, pushing the responsibility to them to monitor compliance and raise issues. Not least because of the power imbalance in care settings.

 

Failure to support residents to make complaints

We know from our helpline that when people face barriers or problems with gaining access to loved ones, too many are afraid to speak out to challenge this with care staff, use their legal rights or report it to the regulator due to fear of reprisals (including, ultimately, eviction). The power imbalance is so vast and people using services are placed in such a vulnerable position, they are afraid to rock the boat. They can even be subject to other professionals reinforcing this power imbalance.

 

A wife who has been trying to get better access to her husband has been warned by the social worker to stop rocking the boat with the care home for fear that they will lose the placement. [Example from anonymous helpline client]

 

Despite CQC’s assurances that issues can be raised anonymously and people’s identities protected wherever possible, many remain afraid that the care setting will be able to identify them.

 

CQC do not accept complaints, unlike their Scottish counterpart. Instead they ask people using care/their families to give feedback on care which they ‘look at alongside other information’. CQC’s model of relying on problems being reported to them simply doesn’t work when so many people are afraid to speak up and have so much to lose. Our helpline also hears of the lack of consistency in approach by inspectors. Some helpline clients report not hearing back from the regulator when they have fed back concerns and uncertainty about what happens to the information. This erodes trust in the regulator.

 

Tony contacted the CQC about the impact cuts in night staff were having on his mother but felt no-one was listening. R&RA supported him to raise this with the safeguarding team and local authority. As a result CQC inspected the home and found staff levels too low at night. [Example from anonymous helpline client]

 

We are concerned that the CQC’s new model of regulation will mean fewer inspections and result in them being even more ineffective in protecting the rights of care users.

 

 

Lessons from pandemic

Inquiry Question: What lessons need to be learned from the pandemic to prevent breaches of human rights legislation in future?

 

There are many, critical lessons to be learned from the pandemic. R&RA have written to the Prime Minister calling for urgent moves to be made to set up the public inquiry into the handling of the pandemic. We requested an urgent meeting with the Government to share insights from our helpline work, to ensure lessons could be learned now, to prevent mistakes being repeated. They have not responded to this request. A summary of some of the lessons to be learned is below.

 

There needs to be a better understanding of the care sector and the needs of people using care by the Government and its agencies

 

The focus must be on people, not institutions

 

Systems to protect the human rights of care users are more important in times of crisis, not less

 

A resident was found by her relative with blackened lips and days old food in her room. The relative raised this with the safeguarding team but they failed to respond. The resident later died in hospital of severe dehydration. [Example from anonymous helpline client]

 

 

The sector needs a robust regulator to safeguard rights and act as a voice for people using care services

 

The care system must have the rights of people using care at its heart

 

Support from relatives/friends must be recognised as essential to care user’s lives

 

There must be improved legal protections and support for people needing care

 

The care sector needs support to use human rights in practice

 

The knowledge gap on human rights in the care sector must be closed

 

The social care sector should be as highly valued as the NHS

 

 

10/11/2021