Nick Kempe: The politics of care and care home visiting

“Care homes are asked to ‘undertake individual risk assessments to assess the rights and needs of individual residents’. The whole point of human rights surely is that no-one should be able to ‘assess’ anyone as not having them?”

ON 20 FEBRUARY, a few hours after the UK Government announced that residents in care homes could receive one visitor a week, the Scottish Government announced they would allow two visitors a week.

Neither government explained the scientific basis for their decisions, but the Scottish Government then shunted the poisoned responsibility for taking decisions about visiting onto local managers:

“This guidance seeks to provide clear recommendations but it is ultimately for local areas and care homes, where appropriate, to take account of any individual facts and circumstances of residents in considering application of any of these recommendations and consider these against the wider risks posed to the other care home residents from the virus.”

A year after the outbreak of the Covid pandemic, the Scottish Government has still not addressed the challenge of how to protect people in care homes while respecting their needs and right to have contact with their families.  The explanation for this gets to the heart of what is wrong with our current care system and the recommendations of the Adult Care Review (ACR).

The first part concerns the Scottish Government’s treatment of human rights. Last September, the Equality and Human Rights Commission called for the Coronavirus restrictions designed to protect health, such as those on care home visiting, to be “proportionate, measured, and rooted in science and the law”. Up until now, none of the various iterations of the guidance on care home visiting (July, October, December) had mentioned human rights. The latest guidance, “Open with Care – Supporting Meaningful Contact in Care Homes”, does, no doubt prompted by the recommendations of the ACR. Including “meaningful contact” in the title appears a tacit acknowledgement that Cathie Russell, the founder of the Care Home Relatives Group, was right to claim that the restrictions on visiting have been a “human rights disaster”.

For most of the last year, apart from a brief period when outdoor visits took place, most care homes have restricted relatives to “essential visits”, if that. Essential visits are supposed to encompass end of life care and cases where a resident is unwell or deteriorating. From a human rights perspective, being allowed to sit with a relative while they are dying is a bitter pill. Many people approaching death are unable to communicate, indeed often they may be unconscious, far too late for people to have the sort of conversations or provide the type of comfort that consoles.  As for other essential visits, the Care Home Relatives Group conducted a survey after revised guidance was issued October which found that “only 10 per cent of people in our group got anything approaching what that guidance would have allowed”.

Having tried and failed at the end of last year to get nominated relatives treated and tested like staff, at the start of February the Care Home Relatives Group called for new legislation to give care home residents the legal right to see one relative whatever the level of lockdown. This followed several meetings with the Scottish Government to no avail. On Monday, along with five other groups representing relatives across the British Isles, they issued a damning indictment of the way governments have treated visiting over the last year.

Despite this campaigning, the latest visiting guidance does little to address the human rights issues. “Human Rights” are listed as the last of eight principles that are supposed to govern visiting, but all the human rights principle says is “local visiting policies should take account of the European Convention on Human Rights”. That’s it, apart from the Annex on Partner Contributions, which is incoherent. Care homes are asked to “undertake individual risk assessments to assess the rights and needs of individual residents”. The whole point of human rights surely is that no-one should be able to “assess” anyone as not having them? 

Local officials, who include Chief Social Work Officers, are to “support care homes so that, where possible, the needs, preferences and rights of residents and their loved ones are being met, taking into account the ECHR”.  But at the same time, Chief Social Work Officers are told in a separate paragraph “to check that the needs and rights of residents are being met”, without qualification.  So, which is it?

This confusion illustrates the problem with “human rights approaches”, which form a central plank of the recommendations of the Independent Review into Adult Social Care. Unless people’s rights are clearly defined and accompanied by specific means of redress, they effectively have little worth beyond moral exhortations.   

The latest visiting guidance still fails to define what rights care home residents should have to receive visitors and what rights relatives should have to visit. Even Jeane Freeman’s announcement of “an expectation that providers will put in place arrangements to enable regular visits to resume from early March” was immediately qualified by “and from the discussions I have had with providers I now expect all care homes to have embraced this guidance by mid-March.” 

Any guidance that depends on providers “embracing” advice is not about rights.  The guidance also contains no provisions for redress, apart from a reminder to staff they should make residents and relatives aware of existing complaints processes. Those standard complaint processes, which can involve the Care Inspectorate, don’t appear to have done anything to resolve the situation of people who have been denied visits for months. 

The content of the guidance further undermines the Scottish Government’s stated intentions by  listing ten pre-conditions before visiting can go ahead:  no Covid outbreak; compliance with Infection Prevention and Control (IPC) measures; visitors to be supervised putting on and taking off Personal Protective Equipment (PPE); screening of visitors for symptoms; visitors to take lateral flow tests before each visit; staff testing; an individualised visiting plan to be drawn up for each resident; high number of residents vaccinated; the clinical oversight team from the NHS to have no concerns about the standards of care in the home;  and, finally, Directors of Public Health to have oversight of the care home’s visiting policy. 

Having met these pre-conditions, care homes then have to meet other requirements, like monitoring visitors’ adherence to infection control measures. Jeane Freeman must know that it is highly unlikely that more than half the care homes in Scotland will meet all these requirements by mid-March as she “expects”. It’s a strange human right that depends entirely on voluntary co-operation from private providers.

Many of the bureaucratic hurdles in the guidance appear unnecessary.  After children, the largest group of relatives who visit residents in care homes are spouses and partners, themselves elderly, often living alone and having little contact with others. Moreover, many of the children of older care home residents (or parents in the case of adults with disabilities) are themselves retired. As a consequence, they are likely to have had little contact with others during periods of lockdown. These groups of relatives are probably at far greater risk of catching Covid from their care home visits than of transmitting it to others. Yet, in the wish to cover their backs after the disaster last year – which had almost nothing to do with visiting  – both the Scottish Government and care home owners appear incapable of viewing visiting from the perspective of residents and relatives.

Moreover, most care home residents have now been vaccinated, half with a second dose, deaths have dropped dramatically and so has the risk of further outbreaks.

On 8 January, before the impact of the vaccines became apparent, the World Health Organisation issued advice on IPC in long-term care facilities which advised that “visits by family members or next of kin are essential for the well-being of residents” and could be managed safely if the right measures were in place. Now, Care Home Relatives Scotland, working with two infection control experts who have written scientific articles on the subject and contributed to World Health Organisation guidance and manuals – one is former President of the Infection Prevention Society of the UK and Ireland – have produced their own guidance. This explains how with good hand washing and use of masks, visits should be possible in all care homes.

By focusing on the fundamentals that staff, residents and their relatives need to know, it says more in a couple of pages than the Scottish Government guidance does in 36. Without power, however, science and reason alone are unlikely to secure relatives’ human rights.

The second and underlying explanation for the denial of contact between residents and relatives is the nature of the mixed economy of care. There are two main centres of power in this system, the Scottish Government, which sets the regulatory framework, and providers, who are almost entirely exempt from regulation. The regulatory system in Scotland focusses on services, and the staff who work in them, not on the providers who are really responsible for what happens in care homes. 

Despite the Covid crisis, the Scottish Government is still unwilling to take on those interests. This is illustrated by their response to the announcement from Barchester Healthcare that they would require proof of vaccination before allowing relatives to visit.  Instead of standing up for the rights of relatives to visit, by threatening to put that right into law if necessary, Jeane Freeman wrote a letter to Barchester asking them to re-think.  

The clearest evidence of the power of providers to ignore the public interest, however, is contained in the fortnightly reports on care home inspections that the Care Inspectorate lays before the Scottish Parliament.   Almost a year after the start of the crisis, the standard of IPC in many of the care homes that have been inspected is still inadequate.  Many don’t have sufficient staff to care for residents let alone to supervise visiting in the way the Scottish Government requires.  They should know this is a barrier to visiting, just as they should know these failings contributed to the horrific number of deaths in care homes over the last year, but still they are not prepared to take on the providers.

Instead, the Scottish Government appears more interested in propping up the existing system.  First they offered up to £50m for extra staff over the winter and then, in December, further funding and support, including  to meet IPC standards.  None of this additional public funding has been conditional on providers like HC-One ceasing to siphon off money into tax havens.

The denial of rights of residents in care homes to have meaningful contact with their relatives provides more evidence of why Scotland’s care system needs to be radically reformed. There should be no place for providers who put profit before care and instead of top-down control from the Scottish Government, we need to create a National Care Services that empowers care home staff, residents and relatives. 

In a National Care Service where power was devolved, care home staff could, through the trade unions, work with residents and relatives to implement systems for safe visiting that respected the rights of all. Achieving that will take a different type of care politics.