IMAGINE being denied the right to see the person dearest to you for eighteen weeks, being unable to communicate with them by any means during this period and not knowing when this situation might end. Imagine, near the end of your life, being told that you might only see the person most important to you on your death bed. That is still the position for many of the care home residents who have survived the Covid-19 crisis and their families.
There is now strong empirical evidence from south of the border which proves that the lockdown and enforced separation of families have had serious consequences for people’s mental health and well-being. The latest, from Alzheimers UK, concerns the impact on people with dementia.
Care home residents may now be at far less risk of dying from Covid-19 than they were 12 weeks ago, but apart from that their future is bleak. The Scottish Government was unprepared for the Covid-19 crisis and failed to put in place adequate measures, such as quarantining all new admissions and testing staff, to shield care home residents. It contributed to the high death toll by ordering the discharge of 1,400 older people from hospital without tests. Practice in those areas has now improved, although there is still no comprehensive plan to protect care homes from any second wave of Covid-19. The one measure the Scottish Government did promote in March, the termination of visits from relatives, is still in place.
An exception was made for ‘essential visits’, defined as those required where the care home resident is highly distressed or is dying. Unfortunately, the power to decide this lies with care homes when, as the Alzheimers research shows, it is often relatives who are best placed to decide whether an older person is distressed or not. In many care homes, all visits have stopped and relatives have been denied the right even to sit with older people on their death beds.
The current restrictions on visits to Care Homes
On 25 June, the Scottish Government published a four-stage plan and guidance on care home visiting. This fails to address the challenge which it rightly sets itself – how to balance “the risk associated with visiting with the harm associated with the loss of visiting” and extending restrictions on visiting indefinitely – and takes no account of Article 16 of the UN Declaration of Human Rights: “The family is the natural and fundamental group unit of society and is entitled to protection by society and the State”.
On the plus side, the guidance does acknowledge:
“The importance of visiting within care homes cannot be overstated, bringing comfort to both those who are visited and to those visiting. Some care home residents are living with dementia, and have limited understanding of events, including the COVID19 pandemic. They may experience distress and confusion – which can be modified by the presence of familiar faces – family and friends who visit. We also know that visits can have a positive effect on diet and nutrition. As such, visiting should be seen as a fundamental part of the care of the resident.”
However, it then creates several significant barriers to any meaningful contact between older people and their families.
First, there is the pre-condition:
“A care home will only be able to permit visiting if they have been COVID free / or fully recovered as agreed by public health for 28 days from last symptoms of any resident [or as been subsequently clarified, member of staff]. This is twice the extreme incubation period for the virus and given the possibility of asymptomatic carriage, is the safest estimate of when a home could be declared ‘outbreak free’.”
This means that if a single member of staff tests positive, even if all other staff and residents test negative, all ‘non-essential’ visits from relatives should stop for four weeks. Care home residents are being forcibly isolated for double the time of older people living in the community. With repeated outbreaks, in some care homes contact with relatives could be suspended indefinitely.
While we don’t yet know the death rate from those infected with Covid-19 in care homes, more residents will have survived than the 2000-plus who have died. Even these older people are being refused the right to see their relatives. The risk to them or their families from meeting is tiny if physical distancing rules are observed.
The second barrier to contact is the swathe of conditions that apply to the ‘non-essential’ visits that are allowed to re-start under phases 2,3 and 4 of plan. Under Phase 2, which came into effect on 3 July and is likely to last for three weeks, residents can see one designated relative outdoors once a week and for no more than half an hour. By contrast, Scottish Government advice for people shielding in the community is that they can “meet up to 8 people outdoors, from 2 other households, in a single day”. Under Phase 3, which may start on 24 July, the older person can see multiple people outdoors and one designated person indoors. Under Phase 4, a “controlled programme of indoor and outdoor visits” will start. What this means is not explained.
It is clear, however, that whoever is controlling the visits, it won’t be care home residents or their relatives. Under all three phases, visitors must wear aprons, gloves and face masks.
The voice of carers
Last week, a coalition of dementia organisations sent an open letter to the UK Government about the similar situation in England. This explains the harm that is being caused by the restrictions and how they are contrary to fundamental human rights. The letter suggested a solution: that designated relatives and friends be treated like keyworkers in care homes so they could have regular contact with their loved ones.
In Scotland, there appear to be no national organisations prepared to advocate on behalf of older people and their families in this way. It has been left to an individual carer, Natasha Hamilton, supported by a local organisation to create a petition to the Scottish Government.
To their great credit, BBC Radio Scotland on Tuesday gave Natasha Hamilton and other disenfranchised relatives a voice. All those responsible for our care home system should listen to them.
Hamilton explained how her mother who is 62 and has dementia cannot use the phone or social media. She had been allowed two visits in 18 weeks, one talking through a window and recently a “garden” visit. She and her family had not wanted her mother to go into a care home, “it was not our choice”, but her Council had not been able to arrange a care package to keep her at home. She had launched her petition because she could not see why if care staff could safely care for residents and go back to the community after their shifts, relatives couldn’t do the same.
John Beattie posed this question to Professor Jason Leitch at the end of the programme. Prof Leitch ducked the question, stating the Scottish Government had that day announced the date for Phase 3 of the plan. Phase 3 contains no provisions for treating designated relatives like staff.
The reason why the rights of care home residents and relatives are being restricted
Part of the reason for the continued restrictions on visiting comes down to fear on the part of government. The guidance was produced by the secretive short-life Clinical and Professional Advisory Group for care homes. This appears to be predominantly composed of civil servants, care home providers and employees of public authorities, representatives of the very system that failed to put in place adequate measures to protect care home residents at the start of the crisis. After the public outcry, their main concern is not to be seen as responsible for any more Covid-19 deaths. Hence the U-turn from casual negligence to extreme caution.
Neither approach respects the rights of older people and their relatives. They still have no voice. There is no-one on the group representing the interests of older people and their families, the people who spoke so eloquently on Radio Scotland. Nor are there any front-line care home staff, the people who could advocate from their personal experience about the damage that has been caused to older people’s physical and mental health by the lockdown
Covid-19 has exposed that all the Scottish Government’s fine words about the importance of respect, empowerment and choice repeated in dozens of policy documents count for nothing when it comes to older people in care homes
Behind this lack of representation and empowerment lies a reluctance by the Scottish Government and care home providers to invest the money which is needed to make visiting safer or enable life in care homes to return to normal. While the Scottish Government had produced a plan to control visiting, it has not produced a plan to return lives in care homes to normal or to prepare properly for a future wave of Covid. Both would require additional investment in care for older people.
Safe visiting and the alterative
Given the will and investment, most of the risks of relatives bringing Covid-19 into care homes could probably be addressed and regular visits re-established.
For older people comfortable with meeting their family at a distance, the risks of doing so outside are negligible. Care homes, however, need sufficient staff to escort frail older people to get outdoors to meet their families. Some lack that capacity. For the winter, every care home would need to invest in indoor meeting places, which were accessible without walking through the home and which were cleaned regularly. That takes more money.
For other families who need and want to have close physical contact, the answer is regular testing, just like staff. If the Scottish Government and the clinical experts believe treating residents like staff introduces too many risks, then they need to initiate a re-think the entire care home system and create modes of care than enable older people and their families to have contact. Article 12 of the UN Declaration of Human Rights, which states “No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence”, provides a legal justification for doing so.
As a start, the Scottish Government could offer any family who is distressed about the restrictions on visiting £600 a week to take the older person home. £600 is the average net cost to the public purse of a publicly funded place in a nursing home. Offering families this money would be consistent with the principles of the Self-Directed Support Act, which aimed to empower people to choose the care packages that suited them. £600 would purchase 40 hours of care a week at £15 an hour gross, i.e. more than the Scottish Living Wage which is what most carers are paid in care homes. A journalist from the Daily Record has reported on how they did just this, albeit at greater cost, as a result of the Corona crisis.
While many families would not have physical space to look after their loved ones or be prevented from doing so through their own work commitments, more detailed consideration of how to address such issues could form part of a future debate on our care system. We need to re-enable families to look after older people where they so wish and address the income and housing issues that currently prevent this.
Family-based care shouldn’t be seen as the whole answer to an ageing population; there are plenty of families which have grown apart and a sizeable minority where abuse has occurred. Any future care system needs to cater for a wide range of needs. But the Corona crisis in care homes has shown that for a sizeable section of the population, their older relatives really do matter. Those people have had their rights trampled on during this crisis with terrible consequences. The lessons from that need to be integral to any new care service.