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.

With a little help from new friends…the Southwark Circle story

Linda Merron

Linda Merron

‘I haven’t had such a good time in my life…ever, I think.’

Linda Merron, who was 60 in March, suffers from ME, heart disease and Crohn’s fibromyalgia. When her 24 year-old daughter Rosie moved away last year, taking her social life (which was also Linda’s social life) with her, she started to worry about loneliness and the implications of ageing. ‘I thought that once I hit 60, people would start treating me like a simpleton. Pensioners are portrayed in the media as foolish and vulnerable; I didn’t think there would be much to look forward to.’

I met Linda at her house near Elephant and Castle in South London, where she was having lunch with her friend, Carmen Hortal, 81. The two women met through Southwark Circle, the first example of what its founders hope will become a national, even international, association of networks of older people. In the year since Southwark Circle started, two other Circles have got going, in Hammersmith and Fulham and Suffolk, and nine more are at the business planning stage. The aim of each of them is to build relationships locally, enabling members to participate in their communities and assert control over their lives. Continue reading