The comfort of strangers

Neil Bell and Gillian Chardet

Neil Bell and Gillian Chardet

Gillian had a house; Neil needed somewhere to live. Gillian was worried about being alone and the responsibility of keeping things working; Neil was largely retired, and could fix leaking taps.

Gillian is 88, Neil 61, and they found each other through Homeshare, one of several local authority experiments to see whether people with space to spare might benefit from having someone living with them, not as a paying lodger but as a helping one. Today the pair of them share Gillian’s beautiful red-brick converted barn in a West Sussex village, with its beamed sitting room and fruit trees in the garden. No money changes hands, but Neil drives Gillian to doctor’s appointments and the supermarket and provides practical help around the house. He is a reassuring and useful presence, both physically and psychologically.

‘We both put our names forward for Homeshare and, after vetting, it was decided we might be a good match,’ Gillian says. ‘We met first in a neutral place, at the house of old friends of mine, then we had a couple of meals out. We haven’t got a terrific lot of things in common, but perhaps that’s why we get on. I think I get more out of it than Neil does. I’m very difficult to share a kitchen with, but Neil’s fitted in with my funny arrangements. I know I couldn’t possibly live with at least half of my friends. It’s all down to him that we get on.’

It can be hard enough living with people you know well, even those you love. Homes are filled with emotion and vulnerability and assertions of identity. But this arrangement evidently works, perhaps because Neil travels light. Gillian’s home remains filled with her stuff; he has his own room, including a toilet and washbasin.

‘I think if I had to share Gillian’s bathroom – to move in my shaving stuff and toothbrush – that might be difficult,’ he says. ‘I get up first and make porridge but other than that we don’t eat the same food. I’m coeliac and have to eat funny food and I wouldn’t inflict that on anyone.’ They do, however, usually sit down to eat together.

Neil is a former builder, traveller and shiatsu practitioner. He meditates for an hour each morning; perhaps his spirituality helps him keep the distance that Gillian needs to go on being herself in her own home.

Homeshare looks in theory like an excellent solution to two dovetailing problems: older or disabled people who don’t want to live alone, and others, probably younger, without much money or anywhere to live, who are willing to offer practical help in exchange for a roof over their heads. Similar schemes operate in Australia, Canada, France, Germany, Austria, the Netherlands, New Zealand, Spain and the USA. The attractions of cross-border homesharing for young travellers or students are obvious and, internationally, Homeshare is much more popular than it is here.

The three local authorities that have experimented with homesharing in Britain have found, however, that marketing and running the schemes is expensive. Applicants must be interviewed and vetted and undergo police checks; they must meet each other and negotiate their likes and dislikes and be monitored fairly intensively for the first month and occasionally thereafter. West Sussex, which brought Gillian and Neil together, was funding a worker to manage the scheme but is now outsourcing the coordination of those homeshares for which it remains responsible and not pursuing any more.

Keith Hipwood is Gillian and Neil’s Homeshare coordinator, his work partly paid for by West Sussex, and partly by NAAPS, the charity that supports small, community based care schemes.  ‘When Homeshare works, it works brilliantly,’ Keith says. ‘But when I took over the West Sussex scheme they had only four matches, following three years’ work. There was a waiting list of 40 people, but West Sussex is a big county and the householders were in the wrong place or not the right matches. Homeshare tends not to become a priority for social services because the process is too lengthy to stop someone going into a home after a crisis; it’s difficult to demonstrate its usefulness in that sense.’

Keith’s view is that Homeshare works best in a clearly defined locality or in dense urban settings. It is perhaps no coincidence that of the three local authorities that have experimented with it – West Sussex, Wiltshire and Oxford – the latter has had most success: it is the most urban, a place where property is expensive, and has a large student population.

Some privately-run Homeshare schemes exist, and perhaps they offer a more promising business model. They usually require a monthly payment from both householder and homesharer; if the schemes can generate enough volume, a coordinator’s salary becomes viable. In London and other urban centres, homesharing has been particularly attractive to foreign nationals, who are happy to undertake work around the house in exchange for somewhere to stay, perhaps even in a rather expensive part of town. NAAPS’ immediate ambition, having recently over the coordination of Homeshare in Britain, is to network the various fragmented London schemes and demonstrate that in the right setting, marketed less as a solution for social services than as an affordable housing choice, it can really work.

Neil and Gillian have been together for two years, long for a homeshare. (Many are fixed-term contracts of six months or a year.) Gillian hopes their arrangement will last forever, but they both recognise that if she develops personal care needs, that will be the end of it, because that’s not what homesharing is about. ‘He didn’t come here to look after me,’ Gillian says, ‘and anyway I’d be absolutely hopeless at being looked after by anybody.’

Being a homesharer does impose constraints on Neil – he tends not to stay out with his partner overnight, and she doesn’t stay in his room because he feels that would unbalance the household. ‘I’ve had friends over to supper and once or twice someone has stayed over, but I don’t treat the house exactly as I would if it were my own,’ Neil says. ‘I became a bit of a nomad after I stopped working, and I suppose that has made me quite flexible.’

‘I don’t mind if Neil has people here,’ Gillian says. ‘I can talk to most people, and his friends always seem very compatible. He’s got his interests and beliefs and I like hearing about them. It’s been marvellous. He’s got his life outside and he comes and goes, but I’m always happier when he’s here.’

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The relentless stress and the joy of being a carer, by the wife of a diplomat

Donna Thomson

Donna Thomson

Donna Thomson is the wife of the Canadian High Commissioner in London and the mother of a son profoundly disabled with cerebral palsy. The Four Walls of my Freedom, the book she has written about the experience of being his carer, is both an account of looking after a child in pain and a meditation on what it means to lead a good life. Thomson has avoided writing either a misery memoir or a book that would speak only to the disability community; this is a book that has something to tell us all.

I happen to have met Thomson, and she is everything you would expect of a high-ranking diplomat’s wife: poised, elegant, attractive, charming. She is also full of fun, fairly bursting with life and excitement and enthusiasm. She is not careworn or cast down – and yet, reading her book, it is hard to square the woman you see with the one who has had to put up with so much; hard to see how she has avoided being overwhelmed.

Nicholas at the age of one with his father

Nicholas at the age of one with his father

She is rather slow to describe the extent of Nicholas’s disabilities in the book, perhaps because Nicholas himself doesn’t really recognise himself as disabled. He has, though, spent his life in a wheelchair and is now, at the age of 21, largely confined to bed. He has very limited use of his limbs and is partially blind. He is reliant on technology to breathe, sleep and speak, and is fed by a tube into his stomach, using an electric pump.

He has endured great pain – Thomson describes periods of life when she or her husband had to get up every 45 minutes through the night to reposition him – and has nearly died several times. He needs someone with him all night, because he can stop breathing when he falls asleep.

When his condition was diagnosed, at the age of three months, Thomson describes feeling determined. She’d known there was something wrong: he’d cried all the time, and twisted his body into distracted shapes and failed to suck. Now she knew what she had to do; she would be the best mother she possibly could, give him the best life he could possibly have.

It was a life derailed, though, as she admits; not the one she had planned for herself or for him. And it has been a slog. ‘Like anyone who has tried to protect the integrity of a loved one with a nasty chronic condition, my life with Nicholas has been infused by a desperate love,’ she writes. This is extreme mothering, and it has made her think hard about the value of Nicholas’s life, and what freedom has been left to her as a carer.

Thomson has come to understand Nicholas’s life through of the writing of the philosopher Amartya Sen, who has argued that true poverty isn’t to do with money so much as a denial of capabilities. What matters for Nicholas is to lead a life that is full, interesting and exciting in his terms, and what has mattered for her is to be able to help him do that. Today he buys and sells on eBay, watches sport on television, plays games on the computer and has rich interraction with his carers and friends.

She has never, she says, met a parent of a disabled child who saw their child as tragic; such children are adored for being their essential selves. She reflects that the ability to think and reason has been considered by some to be the foundation of human dignity; for her, human dignity has more to do with the ability to inspire and receive love and care.

Nicholas has also forced her to consider the obligations of the state to carers: is it right that some people should be forced into conditions that amount to slavery? How is the state to reward and recognise the contribution to society that they make? Why is the public value of caring so low when to do it well calls for exhausting levels of alertness and emotional responsiveness?

This is a thought-provoking and powerful book. Its themes – of the value of the individual who does not and will never ‘contribute’ in conventional terms, of the exploitation by society at large of the caring ‘work-that-is-not-work’ to keep down budgets, and of the need to include the less able in community life in a way that doesn’t bankrupt or exhaust families – are central to an ageing society.

‘Now that Nicholas has survived to the ripe old age of twenty-one,’ Thomson writes, ‘we look for belonging in small spaces – Nicholas’s bedroom will do fine.’ In a world in which we are consistently encouraged to assert ourselves, it is this ability of Thomson and her family to find meaning and happiness that is inspiring and impressive.

Thomson’s motivation in writing the book was to raise questions about what we owe to those whose options are restricted and those who care for them. I am sure that having had a privileged existence, in a beautiful house, with enough money, has helped enormously. Nicholas has been lucky enough to live in Canada and Britain, where there is help from the state; his parents are fortunate to have been able to take out savings plans for his future and to be able to plug any gaps. Yet the feeling you are left with at the end of the book is amazement that Thomson has retained not only her identity, but a personality that is bursting with life and enthusiasm.

‘It is a strange paradox,’ Thomson reflects, ‘that in order to be free, the mother of a child with severe disabilities in our society has to relinquish the choosing self. I can remember thinking more than once, Okay, I give up. I give up imagining that I have a life. I am a servant, not a master. I will be still. I will watch and wait for Nicholas’s next crisis.’ In a society in which caring is so often a lonely, isolating and traumatic calling, Thomson is proof that it doesn’t have to be soul-destroying. But the questions she raises about how we could arrange things better make demands of all of us.

Four Walls Of My Freedom book jacket

I have interviewed Donna Thomson for The Times: you can read the article here.

The Four Walls of my Freedom is published on September 1 by McArthur and Co.

The Big Society is alive and well…in Kerala

Charles LeadbeaterDavid Cameron’s idea of the Big Society seems destined for a life as troubled as its long-lost older sibling the Third Way.

At its worst, the Big Society could be a flimsy fig leaf designed to cover up some of the worst consequences of deep cuts in public services. Charity, local volunteering, philanthropy, at least in affluent areas, may make up for some of the cuts that are bound to come in social care, welfare, arts and libraries.

It would be a pity, however, if the Big Society idea suffered that fate and was no more than a political device. Ageing is just one area where we need different solutions to social need, ones that build relationships and participation rather than simply delivering sub-standard public services to people. Increasingly we need to look at what people may want to do by themselves and with one another. We need solutions that cost less, but deliver better outcomes by doing things differently, as a recent report from the Innovation Unit and Nesta argues.

At its most ambitious, then, the Big Society programme could open the way for the creation of these solutions, which are often more distributed, less institutionalized, and rely less on professionals and more on able volunteers. It could mobilise resources from within the community as well as using public funds; it could build on people’s capabilities, rather than starting from the assumption that they are dependent.

To put it simply: rather than relying on institutional, professional systems, we need to rely more, for at least some of what we need, on social and voluntary systems. These must, however, provide far more than a patchwork of charities. They need to be national in coverage and provide a degree of reliability.

Already in the UK, Southwark Circle and the Circles movement started by Participle is just one example of this approach. However there are far more impressive international examples, especially in the field of ageing, which should set the standard for what the Big Society could achieve, and provide some lessons about how to do it.

One is Japan’s staggering campaign to create 1m “dementia supporters”: community volunteers capable of recognising the symptoms of dementia and helping families cope with the disease. The number of people with dementia in Japan is projected to reach 3.76m in 2035, up from about 1.7 in 2005. The Ministry of Health, Labour and Welfare launched a 10-year programme to promote better understanding of dementia, build community support networks, and provide more person-centred care. By 2008, a nationwide caravan had recruited and trained about 600,000 dementia supporters to be the frontline and first port of call for anyone with dementia. Japan has a highly cost effective health care system with universal coverage. Yet it threatens to be overwhelmed by the costs and complexity of advanced ageing and dementia. Thus the Japanese government has deliberately set out to create a stronger social system to deal with dementia, to reduce the burden on the formal, public health system.

Another comes from Canada where the non-profit Victorian Order of Nurses has launched a programme in which neighbours can train one another to provide respite care. Respite care is one of the most contentious and difficult issues for any family providing care. Often public sector respite facilities are difficult to get into and not what everyone wants. The idea of being able to provide respite by having someone cared for at home by neighbours makes a lot of sense. The VON programme provides a simple toolkit to create a community group in which people can train one another to provide mutual support and respite. When one family needs respite others are ready to step in to share the burden, distributing the tasks and making them more manageable.

The most impressive example of this approach, however, is the remarkable Neighbourhood Network for Palliative Care in Kerala. India’s recent economic growth has meant that many middle class Indians can now afford hospital care, including at the end of life.  It remains the case, though, that the vast majority of Indians still cannot; and those close to the end of life, often elderly, with chronic conditions and quite possibly illiterate, are the most likely to suffer.

A remarkable doctor, Suresh Kumar, founded the Institute of Palliative Medicine in the medical college in Calicut in Kerala in 1993 as a fairly traditional clinic with a community outreach programme. Initially, community involvement in the programme was limited, as were resources, which constrained the initiative’s reach.

The Neighbourhood Network Palliative Care emerged from the inadequacies of this traditional, medically-driven approach to end-of-life care. It is a sustainable, community-owned service offering comprehensive long term and palliative care to the bedridden, mainly based on linked cells of volunteer-led, autonomous initiatives, which now mobilise close on 10,000 trained volunteers.

People who can spare at least two hours a week to care for sick in their area are enrolled in a structured training programme of 16 hours interactive theory and four days of training under clinical supervision. Volunteers work in teams of 10-15 to identify need in their locality and to call in medical expertise when it is needed. Most of the funding for the programme comes from local donations, 90% of which are less than 15 cents. In other words, the NNPC network is funded almost entirely by voluntary donations from the very poor to create a mutual self help network to cope with long term conditions and death.

By late 2007, about five years after the NNPC was launched, it had 4,000 volunteers, 36 doctors and 60 nurses looking after about 5,000 patients. All the doctors and nurses are employed by the community organisations, which focus on providing care at home in a holistic way that combines the medical with the social and emotional.

In a little over a decade the NNPC has grown to cover almost all of the 12m people in Kerala, providing a highly flexible social network for long term and palliative care rather than relying entirely on costly hospitals and doctors. The backbone is a social system which calls in the doctors and nurses as they are needed. In the developed world, meanwhile, we generally try to do it the other way around: we try to socialise and personalise medical and institutional systems that are often impervious to change.

If the Big Society is more than a piece of political marketing, a sop to distract us from the prospects of reduced public services, then it will have to offer the kind of transformation the NNPC has brought about. If you want to see the Big Society, go to Kerala.