A coalition of organisations has written a joint letter to local health and care leaders calling on them to end harmful isolation and to help promote the rights of people in care.
The organisations, including Care England, National Care Forum and Healthwatch England, highlighted the severe and detrimental impact of isolation on people living in care homes and the key role for local leaders in protecting rights and supporting care homes in times of COVID-19 outbreaks.
Care home residents have faced far more stringent restrictions on movement and contact and for far longer than the rest of the population. Measures put in place to keep people safe from the virus have restricted rights to family life, liberty and autonomy.
The role of ‘essential caregiver’, introduced in Government guidance in March 2021, aimed to counteract some of the harm to both mental and physical wellbeing caused by isolation. Although Government guidance states that essential caregivers should be able to continue visiting during an outbreak, in practice we hear that care home managers often feel unsupported by local health leaders to maintain visiting during lockdowns.
We know many managers and their staff are working incredibly hard, in very challenging circumstances, to facilitate in-person contact with relatives and friends and are seeing improvements to residents’ wellbeing as a result. Many have embraced the role of essential caregiver and seen the benefits to the home – in terms of freeing up staff time and improving morale – as a sign that things are returning to normal.
We also hear that many homes would like to open up to more visits but face a barrier from their local health protection teams or local directors of public health/social services who impose blanket restrictions and tell them to close to visitors during outbreaks. This is why we co-ordinated the joint letter calling on these local leaders to fulfil their legal duties by ensuring restrictions on contact are proportionate.
Social isolation and loneliness
Relatives of care home residents have continuously shared harrowing stories of their loved ones’ loneliness, distress and physical deterioration over not being able to connect with their families during the COVID-19 pandemic. Relatives also report negative effects of visitor restrictions on their own mental health. Many of them were not able to support their loved ones when sick or dying and had to witness the despair without being able to comfort. Academic researchers from the United Kingdom and other countries with similar care home visiting policies have been publishing evidence that support these witness accounts. They highlight the downward spiral in the health and wellbeing of care home residents, relatives and staff.
In particular, research shows:
- Social isolation and loneliness is harmful and has increased among the care home population. Chronic social isolation and loneliness is harmful to people’s health and a factor for premature death. An academic study from Ireland, for example, provides evidence that higher levels of social isolation and loneliness amongst people aged 50+ during the COVID-19 social restrictions led to a higher risk of dying from any disease. A Dutch study showed that feelings of loneliness and social isolation increased in care home residents when cut off from family members in the first lockdown. People with early-stage dementia or without any cognitive impairment were particularly aware of the restrictions. According to a study from Israel, residents felt that they had ‘become prisoners of their own age’ and were unfairly treated.
- People with dementia suffered disproportionately. People with dementia are one of the groups of people who were hit the hardest by COVID-19 and the accompanying restrictions. Daily routines, activities and regular social contact is important to people with dementia. A review of multiple international studies published in The Lancet collected evidence to show that isolation under COVID-19 rules made symptoms in people with dementia worse and made them more dependent on their carers for day-to-day activities. The study also reported that people with dementia were more depressed or anxious without their routines. According to the Office for National Statistics, dementia remained the leading cause of death amongst English care home residents during the first and second lockdown.
- Effects of restrictions on professional care workers and relatives. The wellbeing of professional care workers and relatives in care homes also suffered under visiting restrictions. Several studies from the United Kingdom reported that care workers struggled to keep up with changing visitor guidelines. According to one article, relatives felt ‘frustrated and angry’ about restrictions continuing even after having been fully vaccinated.
Tips for tackling visiting restrictions
Care providers tell us that meaningful in-person contact with the people most important in your life is not an optional extra; it is fundamental to good quality of life and intrinsic to basic good care.
Richard Hawes, Chief Executive of Elizabeth Finn Homes Ltd, said, ‘Residents in their twilight of life care deeply about spending time with their loved ones; this is an essential part of their care and wellbeing.’
We know managers are facing barriers to making this happen, so here are some tips for overcoming some of these:
- Knowledge is power: read up on how visiting is relevant to your legal duties under the Care Quality Commission’s (CQC’s) Regulations, the Human Rights Act, Mental Capacity Act and other laws – see the Visiting and the Law section on the Relatives & Residents Association website.
- Individual focus: make sure your individual assessments for each resident are kept up to date. This allows you to adapt to changing needs and demonstrate you are taking a person’s rights and wishes into account, steering clear of those harmful blanket policies.
- Holistic risk assessments: taking into account residents’ wider wellbeing in assessments means considering not just the risk from the virus but also the risk from isolation from relatives/friends.
This allows you to demonstrate that you are protecting all their rights – to safety but also to dignity, family life, liberty and autonomy.
- Acting proportionately: to be lawful, restrictions on family contact need to be proportionate to the risk identified, i.e. the least restrictive option. Have you considered alternative options, such as visits in a resident’s own room to avoid time limits?
- Empowering your staff: using the framework of the law can empower your staff, helping them to make decisions grounded in legal rights, taking the heat out of conversations.
- Citing the law: this can help you justify decisions and break down barriers with other professionals (internal and external) about better visiting practice – remember the law takes precedence over non-statutory guidance.
- Utilising tools: there are plenty of resources available for you and your staff, including the joint letter to local leaders on the Relatives & Residents Association website.
- Seeking help: speak to the Relatives & Residents Association confidential helpline if you have concerns about your visiting practice.
References to academic studies
Clarissa Giebel and colleagues, University of Liverpool, Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19 | Age and Ageing | Oxford Academic (oup.com)
Liat Ayalon and Sharon Avidor, Bar Illan University, ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak – PubMed (nih.gov)
Aida Suarez-Gonzalez and colleagues, University College London, The effect of COVID-19 isolation measures on the cognition and mental health of people living with dementia: A rapid systematic review of one year of quantitative evidence – PubMed (nih.gov)
Helen Wildbore is the Director of the Residents & Relatives Association and Dr Caroline Green is a human rights researcher and Post-Doctoral Fellow at The King’s Fund. Email: firstname.lastname@example.org email@example.com Twitter: @relresuk @CarolineEdAG
How did your organisation manage the visiting restrictions and isolation faced by people in care? Did you follow Government guidance or did you take restrictions further? Comment below to share your feedback on this article.