The year 2022 has been incredibly difficult for people relying on services and for people running services.
The threat of COVID-19 continues, staff shortages are crippling services and the sector is stretched to breaking point. Whilst the rest of the country has gone back to normal, people in care are now the only ones left living under COVID-19 guidance. That guidance is much improved – all restrictions on visiting were removed in March, except infection prevention and control measures during an outbreak when residents can have a minimum of one visitor at a time. However, our helpline hears access with loved ones continues to vary across the UK.
Visiting still a postcode lottery
Many care settings have welcomed relatives and friends back with open arms, recognising the vital importance of these relationships to wellbeing and quality of life. However, some care homes have been reluctant to do so. We conducted a survey (with campaign group Rights For Residents) of over 650 people who had a relative or friend in care. We found between April-September 2022 where care homes had an outbreak, 60% of respondents said there were additional visiting restrictions in place (beyond one visitor at a time as stipulated in Government guidance). 11% reported residents were not allowed any visitors at all.
Often the barrier lies not with the care home but with the local health protection/public health team. Our survey found that in 67% of cases where no visitors at all were allowed during outbreaks, the care home said it was following advice from public health teams or the local authority. This is a pattern we have been hearing on our helpline too.
We wrote to local health protection/public health teams in September expressing concern about their role in imposing such restrictions, on behalf of a coalition of organisations representing both care providers and residents. The letter reminded the local health teams of their legal duties to protect residents’ rights, including to family life, wellbeing and autonomy (as protected in Article 8 of the Human Rights Act).
Relative reality
The letter also stressed the importance of ensuring during outbreaks the one visitor at a time rule is followed – this was introduced in March 2022 and replaced the role of essential caregivers, due to concerns about carer burnout.
“The pressure is so immense and distressing. It is ruining my life and relationships. I can’t sleep, it overshadows everything I do. I feel permanently guilty when I am not by my mother’s side. I get home after a four-hour round trip and know I cannot continue like this. But I do. The worry is constant and there is no end in sight.” Daughter and essential caregiver, February 2022
Isolation and separation of older people from their family and friends is damaging to both mental and physical health, as well as to quality of life. Our helpline hears daily of the impact on residents: losing weight, speech and mobility, the depression and loneliness of lack of touch, the feeling of abandonment, lifelong relationships fading from memory in the fog of dementia.
Even outside of outbreaks, 45% of respondents to our survey said the care home was implementing visiting restrictions. What can seem like minor restrictions on visiting can have a huge impact on residents’ quality of life and sense of belonging. Booking systems, time limits, restrictions on days of week or times of day for visiting can make people’s homes feel like institutions and severely limit who they can see.
“I cannot give quality time, comfort, support, or some refreshment to my loved one while our visits are spent this way [with a time limit].” Survey respondent, September 2022
For relatives and friends, the same feelings of isolation and separation are mixed with anxiety and fear of what is happening behind closed doors when they are not on hand to support with eating, or to spot when a loved one is in pain.
“I am still forced to leave after our allotted time together and so I never even see my loved one being given meals or drinks now. It is all really worrying, and I am totally powerless.” Survey respondent, September 2022
Caregiver concerns
There is also the guilt many relatives tell us they feel about a loved one going into care, of no longer being able to cope but still wanting to be involved as partners in care. Being denied this role makes the feelings of guilt even more overwhelming.
“The day of admission was profoundly challenging. I felt an overwhelming sense of betrayal like Judas Iscariot as I took her by the hand, trustingly, to admit her. I was advised that it would be best for me not to visit for up to two weeks to allow her to ‘settle’”. Sir Al Aynsley-Green, March 2022
A constant theme on our helpline is of powerlessness. Relatives tell us they feel powerless to speak out to raise issues and concerns.
There are so few care options available and it is all too easy for care providers to end the contract or ask residents to leave. When the power imbalance is so skewed, relatives are afraid of being seen as a ‘problem’ or a ‘pain’ and people’s homes can feel precarious.
“My request for Essential Care Giver status [in line with Government guidance at the time] was denied. I was told this was only for situations where the presence of a relative was required to deliver essential care. When I said that this was not what the guidance stated, the care home manager insisted that I was wrong and issued notice to leave…Mum died a week before the notice to leave was due to expire. Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home 16 months before.” Ann, R&RA helpline client, March 2022
Pushing back
As our survey results showed, care homes are often facing a barrier from local health teams when trying to facilitate meaningful visiting during outbreaks. What can be done? Here are some tips on pushing back:
Explain the guidance: don’t assume the local health team is aware of the latest version of the guidance setting out that during outbreaks residents can have one visitor at a time as a minimum, but residents’ individual needs will need to be considered.
- Focus on the law: remind local health teams of their own legal duties to protect residents’ rights to family life, wellbeing and autonomy under the Human Rights Act and to ensure the least restrictive option under the Mental Capacity Act – more information can be found in R&RA’s guide ‘Visiting and the Law’: https://www.relres.org/visiting-guide-providers/
- Use our letter: send your local health team the letter signed by a coalition of organisations urging them to comply with the law and the guidance: https://www.relres.org/letter-isolation-2/
- Frame your discussion around wider wellbeing: remind local health teams they have to consider residents’ wider wellbeing, not just the risk from the virus but also the risk from isolation from relatives/friends – this means protecting their rights to dignity, family life, liberty, autonomy, etc.
- Be honest and transparent: let residents and families know you are facing a barrier from the local health team and what you are doing to challenge this, otherwise they will fear the worst about why they are being kept apart.
- Work together with families: consider asking them to contact the local health team to question the advice, to help reopen the discussion.
- Seek support: speak to the Relatives & Residents Association confidential helpline if you have concerns about your visiting practice or advice from the local health team: 020 7359 8136 and [email protected]
Support from family carers is not an optional extra; it is fundamental to good quality of life and intrinsic to basic good care. To ensure this happens across the sector and is no longer a postcode lottery, we are calling for the role of Care Supporter to be enshrined in law. It would give people needing care a right to the support of a relative or friend across health and care settings. This call has cross-party political support and the backing of over 30 organisations including many care providers. If you would like to join us in this call, please get in touch: https://www.relres.org/care-supporter/
The Care Quality Commission (CQC) on visiting
Why is it important that residents in care homes should be able to receive visitors if they want to?
CQC: Care homes are people’s homes, and residents should be able to welcome family and friends as they did before they became a resident. Residents also have consumer rights, which help to ensure that they are treated fairly and protected if things go wrong. They have these rights, whether they pay all the costs of their care, or whether some or all of the costs are paid for by their local authority, NHS or health and social care trust.
It is important that people’s family and loved ones are able to help plan their care and support as much as they want them to. This sort of involvement is an essential characteristic of person-centred care. Clearly, such involvement is better enabled by family, friends and carers being able to visit relatives in their home, talk to the staff who care for them, and give their feedback – both positive and negative – to the provider.
The Care Quality Commission (CQC) told CMM, ‘We expect providers to encourage and enable visiting wherever possible. In the event restrictions have to be put in place, they should be done in line with the Department of Health and Social Care’s guidance and with advice from local Directors of Public Health. If they deviate from the guidance, a full risk assessment should be undertaken in informed discussion with people using services, their representative and local system partners, with the rationale and outcomes fully documented.’