Unconventional health and care: five organisations delivering care differently

In 2007, David Owen and occupational therapists at the Evelina London Children’s Hospital started to explore using magic to help children with hemiplegia, paralysis running down one side of the body. In traditional NHS services, children and their parents troop over to hospital outpatient clinics for an evaluation of their physical challenges before being given 30-minute exercises for the next few months. Many children hate going, and progress is often painfully slow. 

The therapists explained to David what sort of exercises they wanted the children to practice, say turning their wrists or holding their palms out flat. David then devised magic tricks that would require these skills. On Breathe Arts' intensive magic camps, you can see children intently practising how to shuffle cards or unfurl an endless silk scarf as they prepare for the end-of-camp performance, oblivious that they are repeating the same dull exercises they were shown in the outpatient clinic.

Each of the organisations studied in this long read has found radically different ways of supporting the people in its care. Breathe Arts uses magic to improve children’s fine motor skills; Off the Record, a charity in Bristol, creates movements for young people with mental health problems to lobby for social change; Hope Citadel, a group of GP practices, intervenes directly to address the underlying social causes of ill health in a deprived community, fighting to resolve a patient’s housing crisis rather than simply handing out medication to address anxiety and depression. For the Harvard professor Clayton Christensen, these leaps of imagination – seeing new ways to help people – come in part from a re-evaluation of what people really need from services. We assume that children with hemiplegia need traditional therapy because that’s what we've always done. But if we re-evaluate people's underlying needs, new opportunities spring into view. Children with hemiplegia need to have fun; young people with mental health problems need agency and purpose; people who are anxious because they are about to be evicted need a place to live more than they need medication.

It’s no secret that outsiders, those with different backgrounds and perspectives, are more likely to reassess conventional thinking in these ways. David Owen brought the perspective of a mediator and magician, not a doctor, to the question of how to support children with hemiplegia. At Off the Record, it was youth workers and community activists who started to rethink traditional counselling services for young people. The academic Gary Hamel argues that these outsider voices tend to be silenced in large, traditional organisations. The people at the top have the least diversity and are most likely to see things in conventional ways. It’s one of the reasons why start-ups on the edges of an industry can fell corporate giants.

Hope Citadel’s medical director, John Patterson, describes the moment when a mother of three, Lisa, arrived at the surgery suffering with anxiety. She produced a letter from her housing association threatening eviction and asked: 'What can you do about this, doctor?' It was clear to John that he wouldn’t be able to help Lisa with her anxiety if he couldn’t first address her housing crisis and other personal challenges. If Lisa had cancer, should would be allocated a Macmillian nurse to help with treatment and living at home. But if the underlying pathology was poverty, the primary care practice had little to offer her. 

In 2010, John recruited Hope Citadel’s first Focused Care worker, Ruth Chorley, to support patients with complex health and social challenges. Ruth brought decades of experience of supporting people in deprived communities in the UK Uganda and Tanzania. Ruth’s job was to be the ‘Macmillan nurse’ for vulnerable individuals and families, offering a similar degree of intensive support to people whose underlying problem was poverty. Over the next few years, Ruth supported Lisa in negotiating with the housing authorities, securing funds for her to buy school uniforms, making her children go to school, extracting herself from an abusive relationship, bringing her get her drug and alcohol use and debts under control. A few years later, Lisa’s children were back in school, her ex-partner was in prison, she had secure housing, she had stopped the drugs and alcohol, and she was keeping her finances roughly in shape.

For many of the organisations studied here, the single most important priority is to develop sustained, trusting relationships with people receiving care. Hope Citadel aims to ensure that people see their own primary care doctor whenever they visit, rather than seeing a different GP every time. It also develops GPs’ generalist skills so that they can treat people safely within primary care rather than referring them out to specialist services. A single Focused Care worker will support a person for years if needed, helping them address whatever issues are preventing them from thriving. Senior staff at NAViGO, the provider of mental health services, maintain long-term relationships with individual service users who can contact them if their conditions worsen. In many cases, these services consider the quality of the relationship between carers and service users to be more important than access to the most specialist expertise. What is the point of sending someone to a specialist clinic, where the nurses know all the latest drugs, if they have no way of persuading the patient to take their medicines or change their lifestyle?

Simon Newitt, former Chief Executive of Off the Record, described how, in the late 2000s, he and colleagues began to question their traditional counselling model for young people with mental health problems. The young people in Bristol queuing up with anxiety and depression were struggling with loneliness, coping with a rigid and competitive school system, trying to find half decent work in a stagnant economy, paying half their earnings in rent and battling with discrimination. How useful was it to tell these young people they had a medical problem and label them with a medical diagnosis? How helpful was it to offer one-to-one counselling in response to problems caused by bigger social issues? As Simon Newitt put it to us, ‘how useful are short courses of therapy before sending kids back to their crappy lives’? 

Staff at Off the Record asked whether they could develop support that addressed the root causes of growing mental health problems in young people, for example, by building connections, community, opportunity, purpose and activism to achieve social change. They set up peer-led drop-in sessions (or 'hubs'), self-help workshops, arts-based workshops, cookery groups, projects in nature, reading groups, sports clubs, a bicycle repair workshop, a boxing gym, book clubs, environmental groups and activist project. 

Each of these organisations has reframed problems that were previously categorised, largely or exclusively, as medical matters as part of much broader issues. In doing so, they have also re-evaluated the role of medicine alongside other approaches to addressing people’s problems. At Breathe Arts, they started out by trying to find fun ways for children with hemiplegia to do their physiotherapy exercises. As they ran the camps, they began to realise that other, perhaps more important, things were at play. These are children who struggle to keep up with their peers. They are often singled out or bullied at school. For the first time, they learn to do something wonderful that their peers can’t do. Their self-confidence, ability to solve problems, and ability to make friends blossom. Many of the children on the camps have never met other children with hemiplegia, and most of the families in a local area have never met. By the end of the camps, they are visiting each other’s houses and going on outings together. As one boy on a camp put it: 'None of the people in my class actually have hemiplegia… I’m not the only one with hemiplegia now.'

As they reconsidered their traditional counselling services for young people, staff at Off the Record also began to question what they called the ‘conveyor-belt model’ for delivering health and care services. They asked whether it was useful to follow rigid pathways of care for people struggling with unique personal problems. They also asked whether it was useful to follow a ‘referral-assessment-treatment-discharge model’ when supporting people with cyclical and in some cases long-term conditions. Rather than a service model, they created something that was more like a membership organisation or a club. Instead of following rigid pathways, young people might attend a drop-in hub, participate in peer-led workshops, join a project group, or start running projects of their own. Some young people drop in to Off the Record a few times. Others remain part of its community for years.

Many of the unconventional organisations studied here have abandoned rigid care delivery models in favour of more flexible approaches to supporting people. Rather than strict referral criteria, anybody can refer themselves in to Off the Record’s services, ask for support from Focused Care or attend NAViGO's crisis services. These services often have only a loose framework for helping people with complex problems. If the person’s priorities are cleaning the kitchen or visiting Old Trafford, that’s where these organisations start. Staff work with people for as long as it takes rather than discharging people from services to fixed timescales. In the car park at Hope Citadel's Fitton Hill practice, we met a middle-aged man who was working with a partner charity, bringing items for the practice’s store and foodbank. He had struggled with alcoholism in the past and had ‘a criminal record as long as your arm’. Hope Citadel had helped him to get off alcohol, get stable housing and find a job. It had been a decade-long journey. 

When Kevin Bond became the general manager for Grimsby’s run-down mental health services, he was determined to right what he saw as institutional injustices for people with mental health problems. A mental health nurse by training, Kevin believed that stigmatisation of patients, differences in social status and power imbalances between professionals and service users were what led to abusive treatment of people in some mental health institutions. With the creation of NAViGO he put service users on the board; asked service users to vote on NAViGO’s priorities and how it used its resources; brought service users into roles across the organisation as volunteers, trainees and employees; set up forums to strengthen service users’ voices in how services were run; and put service users on recruitment panels and asked them to make the final decisions on whether to hire new staff.

In comparison with traditional services, these unconventional organisations have struck noticeably different relationships with people in their care. Staff at Off the Record abandoned a ‘paternalistic model’ where ‘professionals do things to patch up service users’ in favour of partnerships where staff and young people work together to find solutions to their problems. Rather than bringing a set of professional objectives, staff at Focused Care and NAViGO start with the person’s priorities for change. As well as rebalancing the therapeutic relationship, NAViGO has gone furthest in giving service users a formal role in decision-making for the organisation. Some of these changes, for example, putting service users on recruitment panels, achieve a tangible shift in decision-making authority, something qualitatively different from the side with the power merely promising to wield its power in a kinder way. Many activists and social scientists argue that these substantive shifts in the balance of power are necessary for health and care organisations to start delivering the sorts of services people really need.

When we visited Off the Record, it was immediately clear that this was different to a traditional NHS mental health service. Rather than spending time with senior managers, we were met at the door by young people who were volunteering or using the service. We spent the entire day talking to peer support workers and young people who were running or participating in groups or projects. We met young people who had come to Off the Record for support and were now running its drop-in hubs while training for careers in health care. Other young people were leading an academic project considering the social determinants of mental illness and the outcomes that matter to people. Young people who had come to Off the Record for help were playing a leadership role in presenting the organisation to outsiders, developing their skills and making connections in the process.

Each of these organisations is harnessing the resources of individuals and communities to address their own challenges. Off the Record draws on young people’s creativity to develop effective support for those with mental health problems. At Off the Record and NAViGO, people with experience of mental health problems play an active role in delivering care: service users take on leadership responsibilities while running support services such as catering or facilities. These approaches appear to make it easier to cope with demand for services. If you are running a club, you no longer need to try to prevent people accessing services. The more people who join the club the stronger it becomes.

The impact on how people feel about themselves is also significant. Karen Black, Off the Record’s current chief executive explained: ‘We are trying to change young people’s perceptions of themselves, challenging the idea that they are passive bystanders in the world, just victims who cannot influence what is happening to them. We are trying to help them to understand how the world is shaped and take back control’. One young person at Off the Record explained: ‘When I am in hospital, I am a service user. I am there to take something. When I come to Off the Record, I am treated as somebody with something to offer. I have needs but I also have strengths and capabilities. I have things to give.'

Laura Neilson, Chief Executive of Hope Citadel, described how one of her Focused Care workers had helped a young woman to escape an abusive relationship with a husband involved in violent crime. A vacancy had come up at a women’s hostel. There was a small window of opportunity to get the woman safely out of the house before her husband came home. The Focused Care worker grabbed a colleague, drove round and quickly helped the woman to pack her bags. In social services, Laura told us, there would need to be risk assessments and approvals. The head of social services would need to be informed. She doubted whether a statutory agency would have been able to respond in time.

The organisations studied here give frontline staff greater autonomy than many more traditional health and care organisations. At NAViGO, staff are encouraged to make changes to how they deliver services. Staff at Hope Citadel and Focused Care are expected to use their experience and judgement to support people in their care, without systematically seeking approval for decisions. At Off the Record, staff and service users are constantly starting new projects, often without the need for approvals up the line. There is an absence of the protocols and guidelines that traditional public sector organisations use to manage risk, but in practice undermine the autonomy of individuals and teams. As Laura Neilson put it, ‘The way the public sector protects itself from risk is to fill in forms. So you have a workforce stuck filling in forms. If you take an experienced band six, with ten years on similar estates, to go and do what they think is necessary, 99 per cent of the time they will do the right thing.’ 

Rather than protocols and approvals, these organisations rely on their values and simple rules to ensure that staff make sensible decisions. At NAViGO, Kevin Bond developed a powerful mantra: NAViGO’s aim was to deliver services that staff would be happy for their families to use. It turned out to be an extremely powerful framework. Consider in the abstract the pros and cons of particular features of traditional mental health services. Then imagine your son, daughter, spouse or a fragile parent being treated in the service. Jane Lewington, NAViGO’s current Chief Executive, has added three additional rules: ‘If you want to do something as an individual, as a team, you should go ahead. Just don’t spend money you haven’t got; don’t harm anyone, whether staff or a service user; and don’t damage the reputation of the organisation.’ At NAViGO, there is also a suspicion of some technocratic tools used to make decisions in health care. Rather than detailed cost–benefit analysis, managers start by asking: ‘What is the right thing to do?’ Then they ask: ‘Where can we find the money?'

During our visit to NAViGO, Mike Reeve, Director of Operations, walked us around NAViGO’s headquarters, introducing us occasionally to service users who were in the building. We spent a few minutes talking to a middle-aged man, David, who was having breakfast in the cafeteria. David had learning difficulties and a long history of mental health problems. NAViGO had brought David into its own services after he had spent seven years in an out-of-area locked rehabilitation unit. David’s face lit up when describing his first few days in NAViGO’s services. Staff asked David what he really wanted to do. The answer was he really wanted to visit Old Trafford. So they booked tickets and went for a tour of the stadium. David explained with huge excitement that he was now preparing, for the first time, to move into his own home. 

The organisations studied here are delivering health and care at human scale. Rather than finding their small size a disadvantage, they have been able to establish particularly close links to their communities. When we met NAViGO’s other senior leaders, it was clear that they also knew David and his story. They were all connected to the people in their care. At Hope Citadel, staff at all positions live, or have lived, on the same council estates as their patients. This surely helps them to deliver humane, compassionate services that reflect the needs of their communities. These close links between small organisations and their communities may also offer a powerful form of accountability. When the primary care trust asked Laura Neilson about accountability arrangements for the new Fitton Hill clinic, she said: ‘I live round the corner from the practice. If we deliver poor care, people will be knocking on the door.’

The anthropologist Jason Hirsch describes driving through rural Maine in the north-east United States. He stopped at a gas station and asked for directions to a town a few miles further ahead. The attendant cocked his head to one side and said: ‘You can’t get there from here.’ In Maine, this is a common expression for a common occurrence. You might be just a few miles from where you want to get to; you might be able to glimpse your destination; but the road network will not take you there. There’s nothing to be done but to turn the car around and head back the way you came. For Hirsch, our ideas about health care are like the Maine road network: sometimes we just get stuck. Research demonstrates that modern food production has contributed to obesity (Pollan 2008), and we know people in the poorest decile in England would need to spend three-quarters of their income to meet national guidelines on a healthy diet, yet developed health systems' primary responses to these big social problems continue to be information campaigns and one-to-one counselling to motivate individuals to lose weight.

When organisations or societies reach these impasses, management theorists and anthropologists seek to expose the mental models or dominant paradigms that shape how we make sense of the world and restrict us to seeing the world in particular ways. What stories, images or assumptions do we carry in our heads that limit us to familiar ways of thinking and acting? If we can bring these internal pictures to the surface, and if we articulate the assumptions that normally go unsaid, we can examine directly their value in shaping thought and action. If we see their limitations, we can start to envisage possibilities that previously lay beyond our view (Senge 2006; Argyris 1993). Each of the five organisations covered here has re-examined dominant mental models in health care: the assumption that people queuing up for health services have what are best categorised as health problems; the belief that what we have categorised as health problems should primarily be addressed with bio-medical solutions; the implicit hierarchy between professionals who apply expertise and patients who need to be fixed; the assumption that health services should be structured along rigid pathways like manufacturing production lines; the belief that efficiency comes from specialisation and scale.

Our intention here is not to argue that these dominant mental models are ‘wrong’, only that they have the capacity to blind us. If an older person arrives at the emergency department with pneumonia, the doctors will identify the precise strain and prescribe a targeted antibiotic, one of the miracles of modern biomedicine. They remain less likely to inquire into the recent bereavement, the trouble with the stairs, or the battle to get to the shops; the causal factors that will bring the person back in a few weeks with a different infection (Cassell 2004). If I am rushed to hospital in cardiac arrest, I hope that the accident and emergency department has rigid, production-line processes and the fastest possible door to balloon time – the time it takes, from my entering the hospital, to insert a stent in my blocked artery. Yet the analogy between patients in health services and widgets on a conveyor belt has limitations. The organisations studied here are dealing with human as well as mechanical problems: they may need to apply clinical knowledge with precision, but they also need to be able to piece together live histories, make sense of unique personal trauma and feel their way towards a strategy that might help. As Jane Lewington put it, 'We aren't simply patching people up after an acute episode. This is about individuals and every person is different.'

Just as there are biomedical models and production lines, there is a dominant model in modern economies for spreading things that work: the franchise or the chain. When Howard Shultz acquired six Starbucks coffee shops in Seattle in 1987, he started a now familiar expansion process. He established central functions for marketing, purchasing and coffee bean processing; devised a company-wide strategy for acquiring and developing coffee shops; developed fixed designs and layouts for the shops; and trained staff to follow precise processes, down to how to reduce waiting times by serving three types of coffee simultaneously from the same machine. Wherever you are in the world, if you walk into a Starbucks, staff should smile at you, the shop should have a familiar feel and the drinks you order should taste exactly the same.

These strategies have been so successful that it’s hard to envisage any approach to spreading a service that doesn’t rely on the established tools: centralising certain functions and codifying a precise delivery model that can be rolled out uniformly at local sites. Yet an increasing body of research questions whether these methods, triumphant in other industries, can really be used to replicate complex interventions in heath and care. Would we preserve what is special in Off the Record, Hope Citadel or NAViGO if we sought to 'roll them out' in the same way as Starbucks coffee shops?

In Radical help, Hilary Cottam describes how the Participle group's Life programme, a relationship-based approach to supporting families, provided part of the inspiration for the coalition government’s troubled families programme. Cottam argues that important features of Participle’s approach were lost when the model was rolled out at scale. The team tried in vain to explain to the government the secrets of their success: their focus on relationships and freeing staff to work in new ways.

Perhaps there is an emerging alternative strategy for spreading these unconventional approaches to supporting people and communities, drawing insight from the small number of radically different health and care organisations in the world – Buurtzorg, Hieligenfeld or Resources for Human Development – that are operating at significant scale? Rather than devising a production manual or an operating model, these organisations appear to focus on spreading a set of values such as compassion and non-discrimination, a set of guiding principles such as their commitment to relationships, and a set of enabling working practices: for example, how to reach decisions without hierarchy, how to co-ordinate while protecting autonomy, how to run effective meetings; how to manage conflict, and how to preserve joy in work.