This is a guest blog from my colleague Anna McEwen (@AnnaSharedLives):
The NHS is great for putting us back together. In the last month alone I’ve needed three different health interventions or procedures where my body has let me down. I am amazed at what modern medicine can do where in the past I’d probably have had to grin and bear it. Some of those interventions have been brilliant – community clinics carrying out operations rather than having to go into hospital, text and book rather than a series of letters in the post to appointments I inevitably can’t make; others less so when I’ve waited many months for a repeat of an intervention that didn’t work the first time, simply because that is the protocol.
But that’s the point of the NHS, putting us back together when we need it. It’s not so good at giving us a good life when we have conditions that aren’t a ‘one off’ or ‘put me back together and send me on my way’.
Last week I joined the latest cohort on the Leadership for Empowered Communities and Personalised Care (LECPC) programme. Some people have questioned why I’m doing this, when the very nature of what we do at Shared Lives Plus is in its essence based in the heart of communities and epitomises personalised care. I’ve ‘grown up’ very much with those values at the heart of what I do in community based roles, advocacy and even as a commissioner very much engaged in finding community based solutions to the needs of local people. However, I think it’s important for all of us as leaders to find time to stop, step back from the day job, listen and reflect which is why I’ve joined this programme.
On the first day of the programme I was struck by Cormac Russell’s analogy of Humpty Dumpty being picked up and not able to be put back together by the King’s horses and King’s men – what if he’d fallen on the other side of the wall and been caught by his neighbours, friends and community? What would have happened then? And we’re very quick to call something a ‘crisis’ and treat as such (homelessness, social care, loneliness etc.) when they are in fact a chronic situation and if we stopped the crisis reaction and looked instead to long term, community based solutions designed with and for the people involved we’d have a better chance of success. The more we move into the acute, crisis mode, says Russell, the more we disable citizens.
As a commissioner, I was all about commissioning for outcomes but now wonder if we are commissioning for the right outcomes: those softer outcomes which really make a difference to people’s lives – like building relationships, talking to a neighbour, volunteering in the community, joining a local group. These are the things that give our lives meaning and purpose and ultimately give us well-being, not just ‘being’.
We know all about these outcomes in Shared Lives, people tell us they make new friends, join groups in their community that aren’t labelled as being for disabled people and gain a sense of well being that they’ve not previously experienced which can have profound benefits on both physical and mental health. I was inspired by others on the LECPC programme who are leading some really innovative work in small patches around the country and I know there is a wealth of amazing stuff happening.
When I tell people about Shared Lives, they always say it’s a no-brainer, that it’s a brilliant solution etc. etc. But that no-brainer is still small, and struggling to break any ground as a healthcare solution. The 200-plus people who our Shared Lives Ambassadors (who have lived experience of Shared Lives) spoke to recently at NHS Expo all agreed that it was a brilliant idea, but still the system bogs us down and makes it difficult to do new things.
My take away from the leadership programme this week was to give away more power, listen more, and get more disruptive. So, for people who are ready to get disruptive in the health system and develop new ways to give people a good life, not just put them back together when they need it, we’re running a series of free workshops facilitated by Nesta to look at how you could develop Shared Lives where you are.
We really need people who think Shared Lives is a no-brainer to make it a reality for people so do sign up and come along to one of our sessions so we can help you to help more people have a good life. It’s free, there is nothing to lose, so come along or share the invite with a colleague and let’s get disruptive……
The workshops will take place from 11am – 3pm in the following locations:
Monday 28th October: London (Friends House, Euston Road, NW1 2BJ)
Tuesday 29th October: Birmingham city centre (venue tbc)
Monday 4th November: Manchester (Manchester Art Gallery, Mosley St, Manchester M2 3JL)
The King’s Fund published an interesting blog on imposter syndrome the other day, after participants in their third sector leadership programme consistently identified it as an issue – surprising perhaps for a group of successful and high-performing CEOs. Even these high flyers reported some of the doubts associated with a fear that they might not be worthy of their roles, or that others are better, cleverer or more suited. I can relate to that fear of ‘being found out’ and how it can lead to the urge to behave in ways that are motivated by managing self-doubt, rather than adding value to my organisation. This can be micro-managing, avoiding conflict or defensiveness in the face of the criticism which ultimately leads to personal growth.
The King’s Fund suggest some practical approaches to managing self-doubt, including seeing it as a skill and an emotion to be curious about, talk about and explore, rather than as a failing. As Lord Victor Adebowale of Turning Point has noted, leadership requires a combination of self-confidence and self-doubt: one to act, and one to act well. There are no perfect leaders, and the only truly bad leaders I have met in this sector have all had an utter lack of self-doubt in common.
The root cause of imposter syndrome is not, in my view, a failing in the individuals who experience it, it’s a symptom of the continuing mismatch between heroic ideas of leadership and what humans can actually achieve in leadership roles without being destructive. We are still conditioned to see leaders as people who can achieve the impossible – the elite athletes of the charity, public service or corporate world. But, just as witnessing elite sporting achievement is as likely to leave people feeling that sport is not for them, as to inspire them to try to emulate what they’ve seen, the cult of the heroic leader can disempower the rest of us, rather than inspire us to share in the awesome responsibilities which we are told these exceptional individuals can hold alone.
The cure for this lies not in improving the self-confidence of people in powerful jobs, but in distributing that power, recognising the unique strengths that each of us can bring and piece together, and including as many people as possible in that ‘us’: including people who are too often described as the ultimate ‘beneficiaries’, ‘patients’ or ‘service users’ of that leadership brilliance. Self-doubt may not be a demon to be vanquished, but the reality of how equal we all are or should be in worth, disrupting the power imbalances which we continue to tolerate and maintain, and to celebrate at every industry awards ceremony.
I have enjoyed reading Mark McKergow’s work on the idea of leader as ‘host‘, welcoming the whole team to the party, stepping forward to start festivities and stepping back to allow everyone to join in. But in the world of charities and public services, I wonder if a better cure for feeling like an imposter, may be to behave more like a guest. That means being able to hear when we are unwelcome, as well as when we are welcome. And more self-doubt as a leader might mean becoming more self-confident as an ally.
In the summer I was privileged to spend some time with one of our members, Cornerstone, which runs Shared Lives services and a large number of supported living services across Scotland. Cornerstone has been attracting a lot of interest, having taken the incredibly bold decision to restructure its work around self-managing teams, as part of a wider cultural change. It has learned from Buurtzorg amongst other proponents of the self-management model, which involves creating cultures and systems within which front line workers can use structured collective decision-making to take all the decisions which are usually taken by managers on their behalf, from buying new equipment, through changing their priorities or even their whole roles.
Cornerstone’s CEO Edel Harris now sees her role and her colleagues’ in the central office, not as holding the decision-making power, but as supporting small, self-managing teams across the country to take decisions, and responsibility. This has seen local teams decide to change services, start new activities and even acquire new buildings. Edel says, “self-management isn’t the end result but rather a vehicle to ensure more personalised services are provided and is just one (important) part of the Local Cornerstone model” (See picture.) I met the team of people who use Shared Lives support, and their colleagues who cooked us a wonderful lunch at the New Beginnings café in Irvine, which they have developed together. There was a striking fit between their Shared Lives support, which combines independence and connection, and the social enterprise ethos, as the team run, develop and embed their business within their community.
For a while, I’ve instinctively felt that we need to see the emergence of local Shared Lives schemes in which ownership is shared between Shared Lives carers, local coordinators and disabled people and their families. We’ve been talking with a couple of local groups and potential partners about trialling this, but found considerable barriers. Although the Cornerstone model currently focuses on self-management amongst its staff team, rather than amongst the wider Shared Lives carer community, the organisation sees self-management as one part of a much broader cultural change, in which increasing local ownership is a key part. And it was interesting to hear Cornerstone’s Shared Lives team saying that for them, the new self-management ethos had not felt like a huge change: they were used to working as an autonomous but mutually supportive small team.
The cultural theorist Frederick Laloux would see Cornerstone as becoming ‘Teal’, in the colour-coded theoretical framework which suggests that organisations and human culture have evolved through a number of stages, from hierarchies based on raw power (Red), through the development of bureaucracies which have fixed hierarchies and are good at stability but poor at innovation and change (Amber), then meritocratic, profit-driven, innovative, but often voracious organisations (Orange), like many profit-making corporations. Some organisations strive for more social value, shared decision-making and shared ownership through co-op models (Green). Now, just emerging ‘evolutionary’ Teal organisations are removing traditional head offices, management hierarchies and centralised functions, and instead creating cultures and systems within which front line workers can (and must) use structured collective decision-making to take all the decisions which are usually taken by managers on their behalf, from buying new equipment, through changing their priorities or their whole roles, to hiring and even firing their peers. For these self-managing organisations to work, people need to be able to behave and communicate with each other in much less hierarchical and competitive, and with much more emotional intelligence.
In my book, I used the framework of asset-based thinking to contrast Shared Lives and emerging asset-based support models, which create meaningful and reciprocal relationships between individuals who are both valued, with traditional support approaches, where systems and hierarchies too often force people to focus on risks, deficits and attempts to ‘fix’ people which are doomed to failure. But thinking of Shared Lives carers as essentially ‘Teal’ people operating within hierarchical / Amber organisations, helps to illuminate both the success of the model and the need for us as sector to rethink the management and governance structures we continue to impose upon Shared Lives carers. Regulatory regimes tend to be ‘Amber’, but the Shared Lives regulatory and practice framework has created space for people to embody many ‘Teal’ characteristics: Shared Lives carers bring their whole selves to work, by bringing their support role, family role, home and workplace together. They are largely autonomous within the national practice framework, and this allows them to take decisions, and risks, which people working in conventional support organisations feel unable to. But that space can shrink very rapidly when there is a problem or crisis such as a professional practice or safeguarding concern. At these points the system attempts to impose hierarchical thinking, which can destroy longstanding households very quickly, sometimes entirely unnecessarily.
I don’t think that self-management or the ‘Teal’ concept holds the whole solution. Laloux applies his ideas only to the workforce of his exemplary organisations, many of which are for-profit organisations which have customers rather than people whose lives they intimately impact upon and control. Shared Lives carers perhaps hint at a further stage of evolution, occupying a space between workforce and community. Laloux is sceptical of the family as the organising principle for an organisation, pointing out that families can be dysfunctional, preferring the image of the organisation as a living organism or ecosystem, depending for its health on the interaction of its living parts. This puts the organisation’s health and success as the primary objective, but that idea has the potential to be sinister when applied to support organisations (and echoes attempts in the US to give corporations greater rights than people, by designing them as ‘persons’). To put the organisation’s wider stakeholders at the centre, would not be compatible with LaLoux’s sector-neutral model but for me that would be the next stage of evolution.
When a charity or public service organisation sees itself as more important than the people and lives it touches, it loses the compassion which is fundamental to its success. Models like Shared Lives, Buurtzorg and Cornerstone all address this in different ways through creating frameworks in which large numbers of people can consistently build much more equal and human relationships. But if we can combine asset-based thinking, which insists on the greater value of individuals than the organisations which seek to help them, and self-management ideas, I wonder if we could imagine a stage of organisational evolution which goes beyond even ‘Teal’? Where current distinctions between professionals and their clients or customers break down, and we can give and receive support from each other more freely and equally? Such organisations would need to be places where both people who seek and people who offer support can safely and productively bring their whole selves: their capacity, potential, challenges and their trauma. Ironically, this new way of living would also be a return to ideas of community which pre-date the professionalisation of public support.
Personalised health care is partly about people who make extended use of health services getting more choice and control over their support, through personal health budgets and other mechanisms, it is also about creating entirely new ways for people to get the support they need. Our new report with support from NHS England sets out how Shared Lives can be at the heart of this change which is going to reach 2.4 million people by 2024:
Jenny, 17, from Bolton, lived at home and is interested in art, and animals. She also struggled to interact with others and has a diagnosis of mixed mood disorder, anorexia nervous and self-harm. Her mental ill health eventually led her to staying for three months in a specialist inpatient service. There, Jenny’s ultimate goal, with the support of the CAMHs team, was to recover her mental health, her confidence and her family’s confidence too. With the support of Shared Lives, Jenny could return home to her parents and they settled on regular respite, visiting a Shared Lives carer’s home and family every week, even though they initially thought it might be better for Jenny to live in with a Shared Lives carer. Jenny went for meals with each potential carer and then stayed with them independently as she felt comfortable and was able to relax. She told the scheme how proud she felt of herself for interacting with new people. Through the sensitive approach of Shared Lives, Jenny has gained in confidence, self-esteem, hope, independence and optimism. Although she still self-harms, it’s not as often and there has been no further accident and emergency visits – a pivotal milestone for Jenny and her family.
Our report sets out what we’ve learned about how Shared Lives can be a route to great health, particularly for people who have a complex mixture of medical and non-medical needs. It also shares what we’ve learned about how hard it is to persuade busy NHS teams to understand, value and use a very novel approach to health care. At today’s NHS Assembly we talked with Simon Stevens and his colleagues about how we can develop a sense of shared responsibility for healthcare, which means sharing power, decision making and resources with the people who make most use of the NHS, and those groups and communities who are most likely to miss out or be excluded. We need all NHS leaders to follow Simon in seeking out and listening to people who know what good – and bad – healthcare means from the inside out.
I’m so excited to see the ‘rainbow’ of community approaches launched on the Think Local Act Personal website. Social care is often talked about as being at the heart of the perfect storm, so I love the fact that our colleagues at Nesta came up with a rainbow to give this snapshot of some of the many inspiring asset-based approaches which are transforming people’s ideas about care, support, inclusion and community development. It shows that these community models stretch across the public service system from prevention and whole-community work, so work at the acute or crisis end. The online directory which sits behind it aims to include scores more models to help commissioners and others find their way through this new world.
Here’s my blog marking its launch:
How do you make big changes to how people are supported, when the kinds of support which work best are nearly always those which feel small and personal? TLAP’s new resource – examples of innovative models of community-centred support – aims to show how to do things differently.
James lived in an epilepsy centre for twenty years, where his medical and support needs were labelled ‘complex’. But his goals were simple: friends and a job. He was able to pursue them in the small, homely setting of Andy’s household, when Andy became James’ Shared Lives carer. James moved in and lived as part of a busy household, before moving around the corner into his own place, with close ties to the household when he needs them.
St Joseph’s hospice noticed that there was a gap in the support for families, which was not easily filled by traditional volunteering. When someone approaches the end of life, it can be an isolating experience for a family. Some friends and neighbours withdraw, or worry about ‘intruding’. Agnes said, “I have friends but no-one turns up to see me, why? I needed to go back to the hospital because … if I was in hospital then people would come to visit me.” Agnes was matched with Lucia through the Compassionate Neighbours programme, which enables people to take on a more personal, open-ended role. Lucia says now she and Agnes are “more like family”.
The changes which Shared Lives carers, or Compassionate Neighbours, achieve in people’s lives are huge for the individual, impacting on their whole life. The challenge for ‘asset-based’ models like these is reaching more people, attracting investment and referrals in public service systems that are designed to make much more specific interventions across very large populations. Large parts of the NHS, for instance, are organised around treating a particular medical condition across populations of hundreds of thousands of people. The senior leaders who control vast council and NHS budgets are expected to be strategic, avoiding getting ‘bogged down’ in detail and taking a ‘helicopter view’. From a helicopter, people’s lives can look very small and insignificant.
I have come to the end of my role as independent chair of The Joint VCSE Review which took hundreds of views from voluntary, community and social enterprise (VCSE) organisations and developed actions, co-owned by government and sector, for how statutory and voluntary organisations should work together with citizens to redesign a more community-based health and care system, and then deliver that model. At national level, we helped design the Health and Wellbeing Alliance and the Health and Wellbeing Fund. NCVO provided the secretariat and a huge amount of support and expertise to the review, along with too many colleagues from the VCSE sector and from the Dept for Health and Social Care, NHS England and Public Health England to list here – I’m very grateful to them all.
My conclusions and recommendations for future joint policy work between government and the VCSE sector are here, and I am looking forward to discussing them with Simon Stevens of NHS England, Duncan Selbie of PHE, and Caroline Dinenage, the Minister of State for Care, shortly. NCVO have kindly published my blog on it here, which begins:
What does the health and social care system want from charities and social enterprises? The answers to this vary, and sometimes contradict each other. Voluntary, community and social enterprise (VCSE) organisations are asked to be more efficient and to merge into bigger organisations which can be contracted with, but they are also challenged to remain rooted in their communities and to tailor their work with specific communities. They should be collaborating not competing, while grant funding continues to be replaced with competitive contracting. The public expect charities to be independent, strong voices challenging the NHS and councils when they let people down. Those bodies generally welcome constructive criticism – up to a point.
When the world’s expectations of us become impossibly complex, the question we should ask becomes simple: what are we for?
One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.
Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.
A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.
Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.
Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.
We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.