We will learn no others

“Friendly and loveable” Ben King died aged 32 after spending over two years at Cawston Park Hospital last year. Ben’s was one of three concerning deaths since 2018. The hospital was in special measures at the time of his death and has now been closed. According to the charity Inquest, the inquest into Ben’s death found that the breathing problems which ultimately killed him, were down to a preventable health condition, caused by obesity which had got out of control when his day support and activities were cut. When he died, there was not even any plan to help him lose weight, despite multiple hospital trips. He was also hit, hours before his death, by hospital staff, who failed to take his condition seriously enough to get him life-saving treatment. So much about this story is familiar from other tragedies: the fuller life led with his Mum, and then, when his Mum could no longer care for him, the decline through unhappy care services, behavioural issues, institutional care, poor medical regimes and diet, and in the end a bereaved mother campaigning for the truth and some semblance of justice.

It is the failures and abuses immediately surrounding his death which shock most: a staff member ‘struck’ him twice when he was already dangerously ill (I can find no mention of a police investigation). Another ignored him as he died.

But in every case of this kind, it is the long-term, systemic failures which should make us most angry: the inability of expensive services to help Ben live as well as he had done with his Mum, who would have had a fraction of the state resources that were spent on Ben’s care. The budget ‘savings’ made by withdrawing a fitness regime which would have kept him alive. The increasing use of powerful drugs to keep him sedated, with little apparent awareness of how dangerous they were.

The inquest makes clear links between Ben’s hospital admissions and bad choices made by highly-paid experts. Why were those links made by none of those experts? The longer someone remains in a medicalised environment, suffering repeated and worsening crises, the easier it becomes for professionals to see that person’s medical and disability labels, their ‘challenging’ or ‘complex’ nature, as the reason things are going wrong for them, rather than decisions the experts are making, which come with all the reassuring rigmarole of diagnoses, risk assessments, multi-agency planning, case notes. Few if any would have a clear picture of how much better his life had been just a few years before. Did his mother’s concerns become easier to dismiss? Some professionals are prone to talk of families’ (particularly mothers’) ‘over-protectiveness.’ And of course, the more unprotected their son or daughter appears, the more protective they try to be. Services, however, are never described as ‘under-protective’, even when their complacency leads to people’s deaths.

As someone becomes de-humanised, their life diminished, their choices and dreams shrunken, their medical issues more enthusiastically examined and labelled, their distress pathologised, then failures or abuse by individual workers become more likely. There will have been skilled, compassionate people working at Cawston Park Hospital. Its parent company has a social media feed full of lovely-looking care and activities (no mention I could see of Ben or the inquest). But there is a long history of organisations which charge thousands of pounds for their expert care attracting people who are thoughtless or cruel, or who become so.

Another young life lost. Another grieving family. No doubt even now, someone well-paid to provide “strategic leadership” to the services which failed Ben and many like him, will be saying that ‘lessons will be learned’. But we remain hell-bent on ignoring the lesson that disabled people and their families have learned in their thousands for centuries: there are deadly risks and harms inherent in incarcerating people out of reach of family, friends and community. For as long as we continue to ignore that lesson, we will learn no others.

Disintegration

This blog was kindly published by the New Local Government Network last week here: Forget integration: we need to disintegrate our public services – New Local

Every few months I find myself in a debate about integration. Long-standing health and care watchers like Richard Humphries, previously of the King’s Fund, have pointed out that this has been happening for as long as there have been separate health and care systems, with plans to integrate the two appearing every few years – dozens and dozens of them in 70 years – but none of them working.

I believe this is because we always start from the wrong question. We look at complex NHS systems and at bureaucratic social care systems and ask, How can we join these bureaucracies up better?

As ever, it’s worth thinking about what it would look like to take a strengths– or asset-based approach to this challenge. This would mean starting with the question, “What does a good life look like for people who use or might need health or care services?’ And then, “What role do services have in enabling those people to live safely and well at home?’

The answers to those questions need to come from people themselves- particularly disabled people and older people, and their families. They need to be conversations which include everyone – the people who make most use of health and care services now, but also the groups and communities who are most at risk of being excluded from or poorly-served by those services.

So we need our national and local leaders to do two things:

1. Set a new shared goal for our dis-integrated public services. In my book, I suggest a single government department for community services bringing at least health, care, housing & local government services together, and a single goal of creating wellbeing and resilience (which is the capacity to maintain wellbeing through challenge and crises).
2. Share power through insisting on co-production and resourcing the citizen-led organisations which are needed to coproduce with everyone.

How would we know this was working? I can think of three useful tests for integration – I’d be interested in what you think of them:

1. Can the system work with households as well as individuals? This tests whether services for people with different needs (and often different ages, such as the disabled child and their parents who are finding it challenging to care for them) can organise themselves around the complexity of their lives, putting us in charge of how resources are used. Or do our lives look hopelessly messy to them?

2. Does integration reduce inequalities? If it doesn’t, then some services may be integrating with each other, but they are not integrating with all of our communities, and community organisations.

3. Can I own and share my own information? This is a process-y point, but it’s a good sign of whether we are aiming to help organisations integrate their existing information systems, or if we are trying to help individuals and families take charge of their own information, and share it with the services which are valuable to them. Having to give the same information over and over is perhaps the most common complaint about dis-integrated systems. It’s not just inconvenient – that information is sensitive, personal or can be deeply painful – so repeating it shows that our dignity is not at the heart of a service’s thinking and actions.

So real integration will be both simpler (not having to make sense of existing labyrinthine bureaucracies) and harder (services accepting new goals and less power). We can replace systems which spend lots of time and money assessing people, but often don’t have a service, let alone the right kind of support, at the end of it, with simpler and more human approaches like Local Area Coordination, which put the rights kinds of help in the right places.

Just as the really hard bit of scaling up innovation is scaling down what we do now, building new integrated systems requires us to recognise that what is needed for some existing monolithic bureaucracies is, in fact, disintegration.

Wrong, dangerous – and deadly?

The latest annual LeDeR report covering 2018-2020 gives what Prof Chris Hatton of Manchester Met Uni describes as “comprehensive, and exceedingly grim” statistics on the deaths of people with learning disabilities. In his twitter thread, Chris describes the shockingly high proportions of people who died who were being given anti-depressants, anti-psychotics, and combinations of powerful drugs of those kinds. Anyone who has worked with people with learning disabilities in health or social care services, will recognise the routine way in which people who have at some point been described as ‘challenging’, ‘complex’ or having ‘behavioural difficulties’ end up on cocktails of powerful drugs, and then more drugs for the side-effects of those drugs (an average of over 6 drugs per person for those who died according to LeDeR). This often goes on for years or decades, with no obvious sense of what the drugs are currently doing for the person, or what would lead to doses being reduced.

Ethnicity, gender and type of disability label all have a bearing on how likely you are to be prescribed various kinds of psycho-active drugs. These statistics of course hide the individual people and lives they analyse, and the Bristol University team who produce the report make a point of starting each annual report with a few stories, like Angela’s:

Angela was funny and had a good sense of humour. She could say a few words and knew a little Makaton. Angela used to enjoy lots of activities including swimming, climbing, bowling and walking but she was less active as she got older. She liked to visit garden centres and listen to classical music.

As we know, “There was a significant increase in the number of deaths at the peak of the COVID-19 pandemic from March – May 2020.” This fact raises many unanswered questions about the extent to which people with learning disabilities were protected and well cared for during the pandemic, and their vital services given all of the safety equipment, support, testing and access to vaccinations which they should have been at an early enough stage. We know that some, perhaps many people with learning disabilities, were wrongly given ‘do not resuscitate’ notices by doctors who believed that they were justified by their disability. The LeDeR report found that 3/4 of those who died had a ‘DNACPR’ notice, with factors such as the person living in a service rather than at home making a big difference to the chances they had one. 6% (up from 4%) of notices for those who died were demonstrably wrong; these will not include incorrect notices put upon people who did not then die.

But it is the correlation between extremely high medication and deaths which Prof Hatton draws out which has been haunting me. As Chris puts it, “Everyone knows this level of medicating people is wrong and dangerous. And it continues.” As NHS England puts it, these drugs, if wrongly administered, can cause not just long term health conditions (such as those associated with weight gain caused by drugs) but other ‘serious’ health problems, yet “every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.”

The number of things that ‘everyone knows’ are wrong, harmful or downright dangerous, which the NHS, social care systems, and learning disability services and their commissioners carry on doing anyway is a long one. I have argued before that as a public service sector, we have become adept at blaming people who use services for the things we knowingly do wrong: they are problematic, challenging, complex, and we are doing the best we can with limited resources. We are fluent in the language of risk and risk management, but wilfully blind to some of the most important risks (in my book I argue that when we say an organisation is risk averse, we usually mean it’s averse to some risks but stunningly complacent about the risks which matter most to people themselves).

But the implication of the facts set out by LeDeR are that the medicalisation of learning disability and the resulting over-medication of people who if they didn’t have learning disabilities would be treated very differently, could not just be harming, but in some cases, killing people. The NHS and government need to be able to answer that question with certainty, and if it is the case, the response to it cannot just be another ‘improvement’ programme.

From better services for some, to better lives for us all

The Social Care Institute for Excellence (SCIE) has kindly published a blog today, in which I argue that the government’s reform of adult social care needs to start not with systems, organisations or even money, but with what kinds of support relationship we want to see in our care homes, home care and community care services. It’s here: https://www.scie.org.uk/news/opinions/vision-social-care

“Reforming adult social care is one of those huge challenges which can only be met by thinking even bigger: a transformed understanding of what we mean by social care support, and ambitious programmes to scale up the best models and scale down those we know do not work.”

Towards becoming an ‘asset-based’ charity

In my recent report, Meeting as Equals, for the Royal Society of Arts and the National Council of Voluntary Organisations, I gathered examples of charities which have reshaped themselves around the goal of being ‘asset-based’: looking for people’s strengths, capacity and potential, not just their needs or problems, and as a result being more willing to be led by people as equals, sharing responsibilities, resources and even ownership of organisations which had previously been controlled by a very different group of people to those who a charity set out to serve.

You can’t do ‘a bit’ of asset-based thinking: it’s all or nothing. The table below is adapted from the report and sets out some key behaviour and goal changes across every aspect of a charity’s work, from leadership, to fundraising, to frontline support.

Many charities talk about being asset-based, and lots claim they always have been. A key test of those claims will be to look at those parts of charity’s operations where the pressure is greatest to think and act in a traditional, top-down way, such as fundraising for instance, where charities can be most tempted to fall back on images of need and vulnerability, and least likely to co-design messages with people who draw on their support. These are also where the greatest opportunities may be: when we are allowed back out on high streets again, how much more powerful it would be to meet people who have benefitted from being part of a charity, rather than be accosted by street fundraisers who know little about the organisation and its cause.

I discussed some of these ideas with the RSA’s Matthew Taylor in a podcast here.

As ever, I’d be interested to hear your views.

The area of change	Where we might be now	Towards becoming an asset-based charity
Relationships	We are there to serve our beneficiaries. We are leaders.	We meet people as equals. We are allies.
Recruitment	We value a narrow range of expertise. Our team come from different communities, groups or backgrounds to our beneficiaries.	People with lived experience volunteer, work and lead at every level. We recruit from the communities we work within. We embody the diversity and equality we call for.
Structure and scale	We have a hierarchical structure with many management layers. We spend significant amounts on staff turnover and responding to failure.	We create autonomous frontline roles, and devolve decision-making and power down to the most local level.
Campaigning	We set the agenda, deploy our expertise and engage stakeholders in our campaigns. Our work often happens behind closed doors.	We find and develop leaders within the groups and communities we serve. We enable people to identify and gather around the issues most important to them, sharing our knowledge and networks.
Communications	We set the agenda and manage our stakeholders and our reputation. We police our brand and pursue reputation management when there’s a crisis.	We share our platform: enabling people to share their stories on their own terms. We curate and co-create content. We don’t seek message and brand control. We prioritise transparency and trust when we make mistakes.
Fundraising	We raise funds for our beneficiaries with hard-hitting campaigns which set out their problems. We compete for attention and seek every opportunity to make an ask.	Fundraising messages are co-designed and co-delivered by people with lived experience. We build communities before asking for money. We give people more choice over how their money is used.
Strategy, decision making, ownership	Our senior management and board has limited accountability to our beneficiaries in setting our strategy and priorities. Consultation groups lack power, a mandate and networks. We include an expert by experience on boards and committees, but worry it’s tokenistic.	We invest in citizens’ capacity to lead us at every level, building our leaders’ skills, networks and career progression opportunities. We build co-ownership into local and national work informally, and through mutual ownership models.

Left behind?

As lockdown lifts in the UK, can we really return to our own social lives, but leave behind socially isolated people who rely on services for care and support? Here is my blog for the Dept Health and Social Care which appeared here.

During a pandemic, which is still far from over, few of us have escaped moments of loneliness or isolation. Even in large households, where a major focus of stress can be a sense of overcrowding and a lack of time to yourself, people have missed out on seeing close friends, relatives and loved ones. People whose work or social lives involve meeting lots of people have also had a very different year. For some, lockdown has been almost entirely solitary.

That experience of being separated from loved ones, friends and our wider communities may have been relatively slight or it could have been all-consuming. For millions of older people and others who have long-standing difficulties around activities outside their homes, the isolation of lockdown may have further embedded a disconnection going on for years, and which is not likely to end with the easing of restrictions.

For many thousands of people, social care or support visits are the only moments of human contact within their own four walls day after day. There has rightly been a huge focus on getting safe visiting back up and running for people who live in care homes, but many of those residents already had little contact with friends, relatives and the local community.

We have also seen how, against the odds, the pandemic has been a time of increased connection for some. For instance, the older people whose streets now have mutual aid and WhatsApp groups, and whose neighbours took the crisis as permission to reach out and offer help to people they had previously not wanted to ‘intrude’ upon.

Innovation vs isolation

Many have started to use new technology and the most creative community groups and charities have reached more people more easily by virtual means than they did face-to-face. Our social media has been full of Shared Lives carers, and the people who are part of their households, finding ways to live as well and fully as possible during lockdown.

Shared Lives carers are approved to provide support and personal care by their local registered Shared Lives scheme and matched with adults who either move in with or visit their chosen Shared Lives carer regularly. Our members have been feeling the pressure of caring within the restrictions of lockdown, without the back up of day services and their routines disrupted. But the experience of living in a Shared Lives household has remained social as well as caring.

These households, by their nature, are often larger, livelier and more social. With government funding, we have even been able to use new tech to speed up the recruitment and matching of new carers, with more than a hundred new households in four pilot areas ready to welcome those who need care and support. Several councils are working with us to increase the scale and ambition of their existing services.

We have also seen a resurgence of Homeshare, which matches an isolated older person with a younger person who needs somewhere to live, with the younger person moving in to help out or provide companionship. Older people were cautious about having a younger housemate as the pandemic hit, but then many were desperate for company and a little help as lockdown stretched onwards, so Homeshare in the UK recovered from its initial fall to grow again last year.

Who pays?

The UK is once again gearing up for a debate about long term social care reform, where the arguments tend to focus on who pays how much for a system which has been under funding pressure for decades. Issues like staying connected and avoiding loneliness can get lost in those big political and economic debates, despite being the most important questions for nearly three million people.

So let’s all think about our experiences of being separated from those we love during this difficult year.

Can we really return to our own social lives, but leave behind socially isolated people who rely on others for care and support?

Instead, let’s make this the moment we commit as a nation not just to providing the care people need when they need it, but also to ensuring we can stay connected with other people at every stage in our lives.

Re-imagining charities

I was excited to join the Royal Society of Arts‘ chief executive Matthew Taylor for his Bridges to the Future podcast the other day: you can listen to it here: https://bridges-to-the-future.simplecast.com/episodes/reimagining-the-charity-sector

We talked about how COVID-19 is reshaping not-for-profit organisations, and how the bravest and most creative of those organisations could reshape our communities, drawing on ‘asset-based’ thinking, to form relationships with people who seek their support in which they ‘meet as equals’, which to my mind is the only way our sector will rebuild public trust and drive the kinds of social change we call for.

I was also interviewed for the AgeSpeaks radio show by Co-Founder of ChangeAGEnts Co-operative Collective Mervyn Eastman. We spoke about how the ways of working and of living I encountered when I met people involved in Shared Lives and Homeshare inspired the ideas for a new kind of public services in my book A New Health and Care System, Escaping the Invisible Asylum.

Robots

Every few months, there is an article somewhere in the press getting excited about the potential for robots in social care. The latest is in the New Statesman: Automated assistance: how robots are changing social care. Samir Jeraj cites two examples of tech helping people to connect with services and notes the ethical challenges: Clenton Farquharson, who employs his own personal assistants and is Chair of the Think Local Act Personal programme for transforming social care, argues for “a rights-based approach”. “As well as accessibility and usability, manufacturers and providers should also be mindful of making assumptions about users’ needs… particularly for marginalised groups” who are “often not around the table”.

There is a long history of looking for quick fixes for the slow moving tragedy which is our current social care system. The National Audit Office today says that despite “substantial efforts from those across the sector to deliver these essential services in such challenging circumstances,” longstanding problems mean that “levels of unpaid care remain high, too many adults have unmet needs and forecasts predict growing demand for care. The lack of a long-term vision for care and short-term funding has hampered local authorities’ ability to innovate and plan for the long term, and constrained investment in accommodation and much-needed workforce development. In a vast and diverse social care market, the current accountability and oversight arrangements do not work.”

Below the attention-grabbing headline, the New Statesman article makes it clear that, in reality, robots are not currently changing social care. It gives two or three examples, the first of which is actually about tech connecting a sick school pupil to his lessons pre-pandemic, and then one small experiment using artificial intelligence to ‘chat’ to lonely care home residents about their interests, and an interesting academic research programme: the National Robotarium.

I’ve nothing against any of this: we are part of a government-backed consortium which is exploring how to combine machine learning, geospatial data mapping and grassroots community action using the Tribe application, and I feel hugely excited by the potential to combine tech and big data with community initiatives that until recently have been entirely offline and analogue.

It is worth, however, thinking hard about what problems we are trying to fix with technology. Many of the innovations grouped under the ‘robotics’ heading are more to do with AI-assisted social interaction than machines providing practical help. I am sure it is possible to create tech which will interact with isolated people in a life-like enough fashion to alleviate some of their loneliness. But why would we want to? As strengths-based models like Homeshare demonstrate, the best solution to a person’s loneliness, is to find another person who is either lonely themselves, or at least has spare social energy. Our Homeshare and Shared Lives teams and national networks are already exploring how tech can target, speed up and scale up those connections. As the NAO found, austerity hit social care hard, but as we’ve seen during the pandemic, there is now more than ever an abundance of caring and social capacity out there in our communities. The New Statesman reports that £34m is being invested in robotics research. When it arrives, the long-awaited social care Green Paper will need to demonstrate that level of ambition in scaling up the community-based innovations we already have in our sector: let’s get as excited about investing in people as we do about investing in robots.

What can foster care learn from matching in Shared Lives?

Late last year, Ofsted published a report on matching in foster care, which concluded that

“Matching children to the right foster families is critically important for children’s futures. Good matching decisions can help to ensure that fostered children have a secure base, feel loved and can enjoy their lives. When matches do not work, it leads to further distress and instability for children, many of whom will have already experienced significant previous disruption and trauma. Unsuccessful matches can result in foster carers taking a break from fostering or deciding to stop fostering altogether, contributing further to the longstanding nationwide shortage of foster carers.” Matching in Foster Care

This seems unsurprising. As Ofsted found, “When we asked children what they liked most about their foster home, they said
they valued feeling loved and being treated as part of the family.” The Shared Lives sector has two key processes at its heart: an extensive, in-depth and values-based recruitment process (currently being modernised through an exciting project involving new tech) and matching, to ensure that people who share their lives are compatible, and that they actively choose each other. The recruitment process is needed because the Shared Lives carer role, like the foster carer role, is highly responsible and autonomous. The matching process is because great Shared Lives is as much about love as it is about skill and professionalism, and few of us love who we are told who to love.

It should take research for everyone involved in care of any kind – adults or children – to know that love is central. Caring is an emotion, as much as it is an act. There is an ongoing debate about professionalisation and professionalism in social care and in children’s services. We want and need people in caring roles to be highly skilled, to have the right knowledge and experience and to be able to work within a regulatory framework. But we owe it to those amazing people willing and able to take on that demanding work to create roles in which they also be fully human. And we owe it to everyone who finds themselves relying on strangers for support at their most vulnerable moments to ensure that they choose the people who will do that, wherever possible.

Boundaries are vital to good, safe services. But we need to ensure that the boundaries we put in place are for the benefit of the people involved (on both sides) in the caring relationship, not to make risks to services easier to manage at scale. As Emma shares in this Fostering Network blog, overly rigid interpretations of rules, and a lack of trust in her and her foster family’s decision-making led to her leaving a stable household for increasing chaos, only resolved through her and her foster family fighting to stick with each other against the odds:

“I went through hell until I was 21…I was not allowed to stay at my foster mums as social services said that I left care. My foster parents tried to fight them but they were told they’d have to stop fostering if they took me in… My foster family was meant to leave me when I left there at 16, but they never did. They have always been there for me and they call me their own just like I call them my own family. That is unconditional love, it’s what young people need as they go into adulthood.”

Matching and professionalism can co-exist, and they must, if we are to have any hope of reducing the unacceptable number of children and young people let down by a care system which doesn’t always know what ‘care’ really means to them.

Meeting as Equals published today

My new report is out today with RSA and NCVO: ‘Meeting as equals: creating asset-based charities which have real impact’, on how charities can make decisions with people, not about them. Now more than ever we need sustainable communities and community organisations. Read it here.

My blog on it is here. You can join the launch seminar at 2pm GMT here.