The care system ‘is forcing people to give up their homes and cut their lives short’

Martin Shipton

Many older people are being forced to give up their homes against their wishes and move into care settings where their freedoms and life expectancy are diminished, according to a pioneering nursing academic.

Jackie Marshall-Cyrus has set up a social enterprise based at Ponthir in Torfaen with a mission to re-empower people of advanced years so they have greater control over their own lives.

A former specialist with Innovate UK, the UK Government’s innovation agency that backs new products and services, Ms Marshall-Cyrus’ community interest company Jackie’s Revolution has received a grant from the Big Lottery Fund and she and her colleagues have submitted their ideas to Members of the Senedd.

She came to the UK from Trinidad and Tobago in 1999 and launched Jackie’s Revolution after extensive experience in the care sector.

Poor Laws

Defining what she sees as the problem, Ms Marshall-Cyrus told Nation.Cymru: “Ever since the advent of the Poor Laws in 1834, we’ve been putting older people into institutions where a small group of officials holds power over a larger group of residents, determining their routines, the regulations that apply to them and so on. Today we call the places where they live care homes or residential homes, but what they provide is institutional care. The buildings may be different, but the model hasn’t changed across the centuries and the decades.

“What has happened is that the government has outsourced its responsibilities for older citizens. These are people who have worked their entire lives, contributing through taxation, through their very life blood – people who have fought in the war for the benefit of this country, and at the end of their lives, they are then relegated to the fringes of society because essentially they are no longer seen as productive or contributory.

“I believe that in the 21st century, when we have driverless cars, when we have aeroplanes, when people can transfer money anywhere, and when we have new materials being discovered, that we must not accept this is the only way.

“We know that people do not want it – people do not look forward to it. It is one of the issues that people fear in terms of growing older. But it is the default mode – and there is a lack of appetite within authorities to look at this. Older adults are ‘other’ people. ‘The elderly’, as they call them, are others. Our mission is to ensure that growing older does not cost us what it means to be human.”

Dehumanised

Ms Marshall-Cyrus said she had seen people ‘dehumanised’ by the system: “There’s a lot going on within the sector that the public is not aware of,” she said. “You’ll have seen Dispatches programmes, where they go in undercover and you see all these horrible things. But it’s not a one-off – it’s not something that occurs irregularly.

“It’s actually an endemic practice. Some of these practices are embedded in the system. And you have the whole issue around carers and people working in the sector not being able to speak out and even when they do speak out they are not listened to. They are persecuted and there are systems in place to silence them.

“This is not a future that I think people of our generation or any generation deserve. I think we deserve a future based on how we want to live, not how other people and organisations think that we should live.”

Ms Marshall-Cyrus said a lot of thinking needed to be done to devise a new model of care that left individuals in charge of their own lives.

“The attitude is that if care has a leak, we’ll plug that leak. When a leak gets big enough and causes a lot of problems, we’ll find a way to plug that. But this is a bucket with a lot of holes and people are falling through these holes, and it’s costing people their lives.

“The average lifespan of someone going into a care home is 18 months. People think it’s because of medical problems, but I have seen it’s because people lose the will to live. People go into these institutions for a number of reasons and often it tends to be generational. And there’s a view that only people in their 70s and 80s live in care homes. That’s not true. There are people as young as 65 living in care homes because their needs purportedly cannot be met in the community.

“Often people go into care homes for a combination of health and social care reasons – often an individual might be falling at home or have some sort of care need. Family are not around; even if family are around, they are not in a position to give the support needed. Often there’s a son and daughter working, and they have children to look after.

“There are some people who accept going into institutional care because they’re lonely and because they have no one around and they want to be with people like themselves. They want to be in a sort of community.

“They don’t form part of the community in their neighbourhood, but they anticipate feeling part of a community in a care home, because they know there are people around their age. I’ve seen people come into care homes, being duped by their family. Their family are struggling to look after them and they say they’re going on holiday and they’re going to put their relative in a home for respite care. Then when the family members come back from holiday having said they will pick the relative up, they’re not seen again.

“I have seen situations where the individual’s voice and the individual’s choice will not be heard, because it’s a matter of convenience that instead of a care package at home, you’re in the institution and everything is done for you in there.”

Multi-disciplinary team

Ms Marshall-Cyrus recalled a case she was involved in when she was the ward manager of a 60-bed rehab unit in Brent, north west London: “We were having a multi-disciplinary team discussion. The consultant was there, the occupational therapist was there, the physiotherapist was there, I was there, the gentleman’s daughter and her husband were there, and he was there, sat next to me. He’d had some falls before being admitted, but he was adamant that he wanted to return to his home. Nobody was listening to him, including myself, because that’s what you do, you plan discharge and we all thought discharge to the care home was the best thing for him, to be safe for 24 hours care.

“But during that discussion, he leaned closer to me and he said, ‘Sister, please don’t let them put me into a care home. If you do, you condemn me to a life of celibacy.’ And that’s when the penny dropped for me. I’d never seen how what I thought was in the best interests of someone in my care could have actually been seen by the individual as condemning them to a life that they didn’t want.

“When I left Innovate UK and went back into practice in care homes, I spent two days in utter despair when I saw what was happening. I’ve seen people go into depression and the first thing they get is antidepressants because people feel that is where they should be regardless of whether they want to be in the institution or not.

“I believe that is against people’s fundamental human rights. Many people are surprised because they think they are going into a place that’s a neighbourhood where everybody’s talking, when in fact half the people have behavioural problems, there are issues around dementia, people are getting hit, people are scared and they’re locking their doors.

“I have had people in the system say I really hope you are successful in what you do because they feel sorry for the people that they have to care for. We need to turn things around for people who do not want to go into an institution. There must be some form of choice and the infrastructure for people to live and die in their own home is entirely possible. There’s no level of care that cannot be given in someone’s own home. I say that because there are young people with extraordinarily high care needs living in their communities with all the support that they can get. You can see them in the supermarket, in the cinema, so there’s no reason other than an ageist attitude and a lack of interest in the welfare of older adults in this country.

“Many people don’t want to engage with an issue they’re afraid of. They don’t want to talk about what might happen to them when they’re 75. We want a change so that life is worth living until your last breath.

“You don’t have to be locked away in some place looking like a hospital. You can go to parties with people in your own group and bring on things that those who run the institutions want to throw out. Bring the sex in – yes, you can have sex until you’re 70, 80, 90. Loneliness is not about living on your own. Loneliness is about the fact that you’re older and society doesn’t give you permission to look for a lady friend. It’s about all those things that are taboo.

“That’s what we want – it’s about fashion, it’s about women aged 75 being able to wear what they want, and do their nails and their hair.”