Relatives & Residents Association

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Isolation in care: a human rights crisis

“This six months has been hell. Joan [my wife of 63 years] must have missed me greatly. Something must be in place in care homes to let us see our loved ones.” Brendan, R&RA Helpline caller, reported here

The continued isolation of older people in care is creating a human rights crisis. It is over eight months since care homes across England closed their doors to visitors and many older people have had little or no meaningful contact with their families/close friends since. Inadequate government guidance and risk averse policies from care providers have made visiting impossible for some families. This is having a devastating impact on older people in care and jeopardising fundamental human rights, including their well-being, autonomy, family life and dignity.

Family life

Visiting restrictions have separated life-long partnerships, alienated parents from their children and grandchildren, and for those with no family have cut off vital support from friends who become as important as relatives. This infringes the right to family life (protected by Article 8 in the Human Rights Act), both for older people in care and for their family/friends. This right protects relationships with family members and close friends, especially important for people living in care settings where those relationships are more difficult to maintain but become a lifeline.

“I’m so afraid that I may die in this place before lockdown is lifted. I’ll never meet my great grandson.” Anonymous resident, via her daughter Margaret, R&RA Helpline caller

Well-being and choice

The sudden loss of contact with family/friends caused untold distress to many older people, particularly those with conditions like dementia. The R&RA Helpline hears of residents who think they have been abandoned by their families, or think that family members are no longer visiting because they have passed away. The prolonged loss of contact is causing deterioration in mental health for many, including depression and anxiety. This infringes older people’s right to well-being (protected by the right to private life, Article 8 in the Human Rights Act). This right also protects people’s autonomy. For many people, the lack of choice over contact with people so important in their lives has been debilitating, suddenly making their home feel more like an institution, taking away the control they had over their lives.

Liberty

Older people living in care have faced a double isolation, not only from their support networks outside the home, but also within the home. Measures to try and prevent the spread of the virus around homes mean many older people have been confined to their rooms, unable to mix freely with other residents and shared areas may be closed. Many are told they are no longer able to leave the grounds. This interferes with another human right, the right to liberty (protected by Article 5 in the Human Rights Act). For older people who were previously active in their communities, enjoyed activities or visiting with their family/friends outside the home, to lose this independence and freedom has been unbearable. It will also be unlawful where there is no legal basis to detain a resident, with a process for challenging the restriction of movement (such as a Deprivation of Liberty authorisation).

Discrimination

For many callers to our helpline, the visiting restrictions have highlighted the stark difference between people who receive care in their own homes and those who live in a care setting. Older people receiving care at home have had the same levels of choice and control as the wider population. This different treatment for those living in care may amount to discrimination (protected by Article 14 of the Human Rights Act), which would have to be justified.

Inhuman and degrading

For some people, the impact of isolation has caused great harm. Our helpline hears of people losing speech, refusing food and drink, refusing medication and ‘losing the will to live’.

“[My wife] starved herself to death. Her death was due to the pandemic – but she didn’t die from the virus itself. It wasn’t coronavirus, or the ‘frailty of old age’ [as listed on her death certificate]. It was death due to a refusal to eat.” Sheikh Rehman, R&RA Helpline caller, reported here

Where people’s physical health is at serious risk or their mental distress and anguish is so severe, this may cross the threshold to be inhuman or degrading treatment. This type of treatment is prohibited by law (Article 3 in the Human Rights Act). Those with a duty under the Human Rights Act, including the government, local authorities and care providers (where the care is arranged or paid for in any part by the local authority), have an obligation to take action where they know – or should know- someone is at risk of this kind of treatment, to take steps to prevent it.

Protecting life

The right to life (Article 2 in the Human Rights Act) places a positive obligation on those with a duty under the Human Rights Act to take action to protect life where they know – or should know – that it is at risk. Clearly, there were many failings during the first wave of the virus for which the Government will have to answer at a future public inquiry (including discharge of hospital patients to care homes without testing, lack of PPE and lack of testing for care users and staff). These failings, and the tragic loss of life they caused, have led to a risk-averse approach to visiting. Government guidance encourages prison-like visiting behind screens/at windows (impractical for many older people) and fails to provide the clarity, support and leadership needed to encourage care homes to safely manage the virus.

Urgent action needed

The human rights crisis unfolding in care homes requires an urgent response. Since R&RA first called for a strategy for safely unlocking care homes in June, there has been a deluge of evidence from all corners of the country about the impact isolation is having on people’s rights. The Government cannot ignore these voices; it has a duty to act to protect people’s rights when it knows they are at risk.

Although family life and private life are rights that can be restricted, including to protect health and the rights of others, any interference must be proportionate. Blanket restrictions won’t cut it (the Government is facing a judicial review of its guidance for encouraging blanket rules). A proportionate response means finding an alternative which, whilst seeking to meet the ‘legitimate aims’ of protecting health and the rights of others, respects private and family life as far as possible.

This alternative is what R&RA have been calling for since June. We must permit essential visitors, with the same safety precautions as staff (including regular testing and appropriate PPE). This will achieve a better balance between protecting people from the virus and protecting their rights to well-being, autonomy, family life and dignity.

So far the Government has only committed to a pilot scheme to give family carers keyworker status. The announcement came with no details and almost a month of silence followed. A pilot is a wholly inadequate response to the urgency of the human rights crisis unfolding. It is too little, too late for many. The prospect of a winter of continued isolation could have catastrophic consequences for older people’s rights.

This is not unchartered territory. The national ban on visiting in hospitals was lifted in June. The Scottish Government recently updated its guidance to allow visits by family/friends, including children, alongside a raft of support measures for people in care.

Quality of life, not just quantity

Human rights laws do not require protection of the right to life at all costs, at the expense of all other rights. As Justice Munby said, we must resist the temptation to wrap people in cotton wool by always putting the physical health and safety of older people before everything else: “What good is it making someone safer if it merely makes them miserable?” Instead, human rights require balance, processes for managing risks and individualised approaches.

This balance between safety from the virus and protecting other rights is critical for older people, who go into care homes to enjoy a good quality of life in the latter stages of their journey. The average length of stay in care homes is just over two years and we are now in month nine of visiting restrictions. For some it is too late and the loss of that precious time can never be replaced, leaving scars that might never heal. For others, time is of the essence. The Government must take urgent action to safely reinstate the vital support networks older people so desperately need to avoid spending the final stages of their lives in isolation. We need action now to protect older people’s human rights so that they can live, not simply exist.


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