We are delighted to welcome to the Commission on Care blog Prof Ann Stewart from Warwick Law School. Prof Stewart works on the socio legal issues relating to care from a gender perspective. She is interested in the legal position of ‘carers’ and the regulation of care homes in the UK. Her work is more generally focused on issues relating to gender, law and development with a focus on gender and ageing. See here to find out more here about Ann’s work on gender, care and ageing.
I have been watching at distance (I am presently ‘locked down’ in Spain while on study leave) with despair at what is happening in the UK in relation to the social care sector and care homes in particular. There is a massive emphasis on the role of the NHS – everybody is raising money, providing support, rightly seeing all the medical staff as heroic in their attempts to keep people alive. Until this last week there has been no such focus in relation to home care and care homes. The issue has emerged briefly into the spotlight mainly as a result of the work of Channel 4 journalists. As a result one of the daily government news by the Health (and social care) Minister’s briefings was dedicated to this issue. A cynic would say that the promise of a social care ‘badge’ to enable social care workers to get better treatment in supermarket queues is a welcome recognition but unlikely to address key issues.
This neglect is bordering on the criminal. Yet this sector is where the most vulnerable elderly people are cared for by paid and unpaid care workers.
It reveals the huge intersectional inequality between health – provided via the NHS and care – a local government responsibility which is provided by the private sector and charitable foundations. Two different systems funded and administered differently from the inception of the post war welfare state. The NHS providing health cover ‘from the cradle to the grave’ is now mainly public versus, social care seen from the outset as a residual service (because most care was assumed to be done by homemaking wives) now grossly underfunded by central government (and administered by local government) and almost exclusively privately provided.
The two different governance frameworks, social care is the responsibility of local governments; the NHS is a national (if devolved) responsibility do not work together despite obligations to co-operate in legislation. Medics are not interested in care – care is something that is done when people/patients don’t need or can’t benefit from health interventions. Social care is provided by overwhelmingly by working class women, members of minority ethnic communities and migrant workers –precarious, poor and marginalised workers working for minimum wages with access to very little limited training and support. Doctors and nurses have a very different if diverse demographic. The different positioning of care and health systems is visible at the daily government briefings. A minister is flanked by 2 medical experts each day. There is no equivalent expert for social care. Those responsible for provision are business people or charity managers not medical experts. Those responsible for public funding are local authorities. This does not mean that these constituencies do not care or lack expert knowledge. They simply lack the same voice. Recent research on the impact of the virus on care workers by Professor Lydia Hayes and her colleagues has called for their voices to be represented and to be included in policy development.
The figures relating to infections and deaths are reported daily for those within the NHS – patients and staff. There is as yet no similar reporting because there are no equivalent figures for these in social care settings – people receiving care at home or in care homes because there has been little or no testing for CoVid 19 in these settings. They are reported by ONS with a lag of over a week in the ‘died in the community’ count. Nobody has any idea of the actual levels of infection except those working in these contexts where they are describing multiple deaths each day in homes. There are unofficial estimates of huge levels of infections – estimated that half of all deaths are in care homes. There is no reporting for care worker deaths apart from within general population deaths. Nobody knows whether they are being infected at work or elsewhere because they are not being tested in any systematic way.
There is a huge shortage of protective equipment and clothing. The NHS has a supply system, now under immense public scrutiny, with every effort being made to meet demand. Each care owner (many of whom are small businesses although the sector has some big providers as well) buy theirs on the market – which of course has dried up. Only in the last few days has some sort of public system for providing equipment to care homes and domiciliary care been set up although leaked reports suggest this remains chaotic.
The elderly at home or in care homes are not attended by doctors generally. They rely on the care homes staff/social care workers. They are not referred to hospitals because they are considered ‘beyond treatment’. This may indeed be an appropriate response for those who would not benefit from the massively invasive treatment needed but there are suspicions that general assumptions might be being made. Patients in hospitals are discharged to care homes when they do not need more medical treatment. Homes are obliged to take them now under new rules if they have capacity. They arrive in ambulances with staff wearing full protective gear to be received by care workers with little protection. They enter homes possibly carrying the infection to conditions where it is exceptionally difficult for staff to maintain safety through isolation and other such measures.
Nobody is allowed to visit in people’s own home or in care homes even if someone is dying. The same is the case in hospitals now but the context is different. There is no public scrutiny in small residential homes, however good the staff are and even before this pandemic there was grave concern about the level of care provided. This sector is under resourced financially and managerially fragile.
Such settings have become ‘death traps’ for vulnerable and older people – largely unrecorded, overlooked. The staff are caring for people who are dying of the same infections which receive in hospitals enormous levels of medical support from skilled staff who are themselves well supported and in the main well protected. At home or in care settings people have none of this. Their carers are doing their best with the skills they have but they are not viewed as heroes. There is very little public fund raising for them. They do not feature in heroic videos. They get the occasional mention as an add on – the spotlight of one daily news briefing . Because of the precarious employment position of many carers they are putting themselves and those they care for at risk because as the research by Professor Lydia Hayes and her colleagues has revealed self isolation puts an unbearable strain on their finances.
The unspoken but obvious intersectional issue is that nobody cares about the care workers because of who they are – predominately working class women often from minority communities and migrant workers.
Only in the last couple of days has there been more public scrutiny by journalists and the media more generally about this situation which has prompted the politicians to take notice. There are now calls for recording of deaths on a daily/regular basis; for more protective gear; for more testing. Welcome but this is in many ways too late.
There is an unspoken but obvious sense in which these people because they are old, frail or vulnerable and those who look after them don’t matter much. Age discrimination is not an easy issue in the overall Covid -19 context. When resources are finite choices have to be made. But that is far too simple in this context. This level of neglect is not about stark choices of who can benefit from a ventilator (and in any case the NHS has managed through enormous ingenuity and will to provide enough). They are about treating everyone with same level of respect and providing the level of resources that are needed to keep them safe for as long as they are able to live (see for example, HelpAge International on the rights of older people generally, and my work with Jennifer Lander on gender and ageing: ‘Transforming gender relations in an ageing work’ ).
It is equally about valuing the lives of those who provide their care and as this pandemic has so vividly shown valuing what we academics call social reproduction – the unpaid family and community based care – that we all rely upon for our survival.