Latest news

A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), Chief Executive of NHS England, who said, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society” Read the introduction here and get a 30% discount code.

Florence is 95 and Alexandra is 27. Their Homeshare story has been watched 25 million times. People are using Shared Lives to recover from mental illness in the community: two minute version and seven minute version  of our new film.

Our £1.75m partnership with NHS England is developing Shared Lives as a new form of healthcare with 8 local NHS trusts. The Shared Lives Incubator social investment programme is investing in Shared Lives in three areas. Lloyds Bank Foundation,  the Big Lottery Fund, SCIE and partners are growing Homeshare in the UK.

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The Future is Close

Our public services are a sanctuary: living evidence that we do not abandon people who find themselves needing support to their fate. But every sanctuary has the potential to become prison-like. It is not always easy for those of us who have a hand in building, maintaining or defending those services to recognise the harm they can do as well as the undoubted good. We tend to want to place responsibility for that elsewhere, and in time the things we get wrong over and over become things we take for granted or refuse to see. Even when those problems repeatedly become tragedies that no one can ignore, we can act as if they are aberrations. We will learn lessons. Policies have been changed. They are ‘never events’, until next time. We can trace the exclusion and oppression of people who have a learning disability through countless reports and plans. The Winterbourne View scandal felt like a never-again moment, but it was followed by more failures and in the past few weeks the regulator CQC has been asked to carry out another review into institutional care for people with learning disabilities following more distressing cases of prison-like conditions.

Meanwhile more than a million older people no longer get the support they might have expected previously, and millions more silently suffer loneliness. Social care performance as a whole is improving, but the gap between the best and the worst widens. Some of this is about resources, but not all. Even on a shoestring, caring and motivated people can help people achieve great lives. But how do we create system which sees those good lives become the expectation, not the exception?

This is often described as a ‘culture change’, or dependent on ‘local leadership’. But culture cannot be separated from the structures – what people think they should buy, sell, measure, expect, reward and punish – within which we all work. There will always be leaders – and families and front line workers – strong enough to do the right thing in the face of pressures in the opposite direction. But we need doing the right thing to be what everyone feels safe and able to do, all the time.

Tomorrow the Social Care Future event in Manchester will bring hundreds of people together to try to show that a better way is possible. The local areas who are gathering to share what they have learned have the same pressures as other areas. They do not pretend they have everything fixed, but they are committed to the kind of whole-area change that is needed to bring what works best for people out of the margins and into the mainstream. We will be there to show how the quiet, slow and patchy growth of Shared Lives and now Homeshare demonstrates what you can grow even in an unforgiving climate. Other community-based approaches will be there too: for once, their work will be at the centre of an event, not at its margins.

Crucially, Social Care Future’s participants will be people with lived experience, not just the usual suspects. Those of us in positions of power or influence have demonstrated over years that we can’t dismantle old systems and build completely new ones, certainly not on our own. Real change comes when we are prepared to listen, and to work in support of a vision for a good life that feels real to people who use support and their families.

Social care’s present is over-stretched, under-funded and under pressure. We all need it to have a future worth fighting for.

Huge thanks to Martin Routledge, In Control and the organisers of Social Care Future for dreaming up this event and making it happen for all of us.

The system said nothing

The family said, “The system will only help you when it’s already too late.”

The social worker said, “I came into this job to help people, but our systems get in the way.”

The manager said, “We know we need to do things differently, but we have to work within the systems we have been given.”

The director said, “We’ve got an exciting new vision for empowering people, but our systems take so long to catch up.”

The Minister said, “The first thing you learn in this job is how hard it is to change the system.”

But there was no system, so the system said nothing.

Own it

I enjoyed meeting colleagues from Hertfordshire at the council’s annual Festival of Practice: a week of seminars, learning and reflection which the council invests in its social care team and their colleagues in the council, NHS and the voluntary and community sector.

During my session on Escaping the Invisible Asylum we talked about the difficulty of introducing asset-based or strengths-based practice into stressed, medicalised systems, if we want those new approaches to take root and grow. However small the beginnings, the goal must be complete transformation of the local system, so that every intervention in people’s lives is asset-based. Key tests for this are that all services and interventions:

  1. Look for what people can or could do, not just what they can’t
  2. Connect people and minimise the extent to which they disconnect people – our close relationships are key assets
  3. Build resilience for the future, rather than just addressing ‘presenting need’.

Only services and systems which are co-designed with the people who use them and work at the front line will achieve these changes, so these are shifts in who has power and responsibility. For instance, if your service is genuinely asset-based, its systems will treat the risks that people take as theirs to own, but will share ownership of the risks the organisation carries or creates: the individual remains in control wherever they can exercise that control, even when things get risky for them or the organisation working with them. The older person who falls regularly but wants to live at home has that right. Great hospital discharge teams support that person to understand and mitigate that risk, rather than pushing them into a living situation which feels ‘safer’ to the professionals.

We discussed the behaviour changes that would be needed if a system was to become genuinely asset-based, and the systems needed to make those behaviours possible, such as offering help to people to plan for a good life, rather than always starting with a needs assessment. The table below suggests some behaviour changes at the front line, and the leadership behaviours needed to make those changes possible and safe:

Workers and volunteers Commissioners and leaders
Seeing capacity & potential as well as need Building in more time: offer planning before assessment?
Humility and courage Healthy workplaces.
Confidence: focused on what matters most to people Seeing risk more clearly

Measure good (& bad) outcomes

Valuing relationships, networks Thinking ‘whole-household’
Sharing responsibility: ask more, offer more Sharing resources, knowledge, power

The most important question, then, is what changes would these new approaches ask of people who use services and their families? And what would they be offered?

Too often, a move towards community-based approaches is framed as asking for more volunteers, or asking more of families who already have unsustainable caring burdens. It is much rarer for those currently in charge of resources and systems to offer to share that power and the responsibility which goes with it. At the heart of that reluctance is a lack of trust, and asset-based thinking starts with trust: faith in people’s ability to take responsibility, in their creativity and that they won’t act purely in their own interests. This is why coproduction is so important: any asset-based system has to be co-designed with the people who will use it, deliver it, share responsibility for it and ultimately own it.

Locked up

Secretary of State for health and social care, Matt Hancock, has ordered the Care Quality Commission to instigate an immediate thematic review into “the practice of prolonged seclusion and long-term segregation for children and adults with a mental illness, learning disability or autism in secondary care and social care settings.”

This follows another distressing case of a young woman with autism kept in solitary confinement in an Assessment and Treatment Unit (ATU): a kind of mental health institution. The only contact she is apparently allowed with her father is via a hatch. The use of restraint in ATUs, including seclusion, medication and physical restraint, has almost doubled in the last two years to more than 26,000 incidents of restraint in 2017. NHS England believes this may be due at least in part to better reporting, but it is nevertheless an extraordinary number and worrying trend. ATUs are intended to be a short term measure, but instead the average length of stay is well over five years, and one young man was in an ATU for 18 years.

There can be no excuse for keeping disabled people in solitary confinement for long periods, without any hope of release and the Secretary of State is right to order a full investigation by CQC. That thematic inspection is unlikely to find anything new: the problems with housing people for long periods in institutional settings are well known. Decades of research have shown that institutions tend towards abuse, but even where there is no behaviour which is found to be abusive, the very nature of such institutions is abusive: people are confined away from friends and family, with little opportunity for an ordinary life. The logic of the institution takes on its own momentum: each “incident” is a reason for confinement, restraint and medication. The unhappiness which results from that malign trinity, in turn feeds more incidents.

Can a young woman who has been convicted of no crime really be so dangerous to warrant a kind of solitary confinement which prisons hesitate to use with hardened criminals? Her support no doubt will be costing taxpayers thousands of pounds a week: is that money not enough even to pay for the staff needed to manage any risks of more human contact?

A CQC review will help to remind us of how wrong the current system is. That is necessary, because we forget so quickly people kept out of sight and mind. But the opportunity for change lies in investing the public funds currently paying for expensive, low-outcome institutional care, in providing wrap-around support to make family and community care viable for people whose behaviour can be risky or ‘challenging’. We have developed ways in which Shared Lives could be combined with other support models to make it more viable for people considered challenging. Ultimately, any community care model requires us all to see risk differently: recognising that while the risks of ‘challenging behaviour’ matter, so does the risk of long term incarceration.

We all need to insist on change, and to be willing to make it happen. Personally, I would like to hear from clinicians and commissioners with the creativity and capacity to work with us, Shared Lives carers, and other like-minded people and organisations to make that change happen.

Knowledge is power

I contributed to a debate today in the Houses of Parliament hosted by Lord Filkin and the South East England Forum on Ageing, which has been looking into the future of information and advice services for older people. Information and advice services are not the most high profile within the care and health world, but like many bits of the system that don’t get a huge amount of attention, they matter.

They matter because knowledge is power. The information we have about our options not only shapes our own choices: it shapes the services which are available too. That’s because people can only choose, and invest in, what they know about.

We live in a world where there are more support and healthcare choices than ever:  hundreds of thousands of people with personal budgets and personal health budgets can choose to spend those budgets outside of traditional services. The increasing number of ‘self-funders’ who have to pay for their own care can choose from a market of support services which includes some innovative start ups. Thousands now can also choose a widening range of community and asset-based models like Shared Lives and Homeshare

But for some, there are also fewer choices than ever: austerity has seen over a million people with no support at all and almost all social care cuts fell on poorest areas according to a Guardian newspaper report.

So the first conversation someone has with their local council or NHS is crucial. Information and advice services are not a passive pipeline through which information flows, they are the first place where someone’s relationship with services and ideas of what’s possible are shaped.

So whereas some information services see their role as ‘signposting’ people to (an often diminishing number of stretched) services, a Local Area Coordinator’s role is to help someone to think about what a good life looks like to them, before thinking about the best way to achieve it. That may involve drawing on services, but equally it might start with building or rebuilding relationships with a whole range of people around them. Local Area Coordination is explicit in its goal not just to support individuals to have better planning conversations and make better individual choices, but also to reshape services and communities around those choices.

We are at the sharp end of this relationship between knowledge and power at Shared Lives Plus, because our members offer two ways for people to form supportive households which are both under-offered and under-used. Shared Lives and Homeshare could be offered to everyone, but are currently offered only by those information services which think outside the box and start with the good life question. Approaches which are used by a small group only attract small development budgets: this is one of the self-fulfilling prophecies that I argue in my book are hard-wired into our system, promoting endless tweaking to the most-used models but stifling more radical change.

After the death of her husband, Rosemary Continue reading

96%: Shared Lives beats all comers

Every year the Care Quality Commission (CQC) publishes its report based on inspections of all health and care services in England. The report does not distinguish Shared Lives from the much wider community care sector this year, which obscured the fact that, according to data supplied to us by CQC, 5% of Shared Lives schemes are outstanding (the joint best results in the sector) and 91% are good (the best results in the sector). 4% require improvement (the best results in the sector) and none are inadequate. 96% good or outstanding sets a new standard for what’s possible, in the teeth of continuing austerity and budget cuts.

Congratulations to our members for raising the bar again this year. Feedback from members tells us that the support they get from the Shared Lives team, including tools such as our quality framework and outcomes measuring tool, have helped achieve great results, particularly for schemes which have made it to ‘outstanding’.

We are proud of our sector, but not complacent: no model or group of providers is perfect, so we will be continuing to work with people with lived experience, Shared Lives carers and scheme workers to spot what can get better, and make sure it does!

 

Pretty cool, in our own way

I’m biased of course, but the Shared Lives Plus conference doesn’t feel like other national conferences. Partly that’s because the people involved in Shared Lives and Homeshare are a friendly bunch, and make the event welcoming and informal, despite having nearly 200 attendees. What’s made the most difference though, I think, is that people with lived experience take a central role. Our Ambassadors are all people with lived experience of using Shared Lives support and they co-chair the event. This year Meg, who spoke about her Shared Lives experience in parliament earlier in the year, co-chaired with Victoria Collins, the acting Director of Adult Services for Milton Keynes, who gave us a warm welcome to her city. Ambassadors also help run the workshops and speak in the plenary session, this year on the theme of equalities. You will find their presentations over the coming days on the Shared Lives Plus website.

This year, Peggy, a Shared Lives carer, talked about her experiences supporting a young person born male, who has at times identified as female and at times as male. She talked movingly of her own learning curve on an area of life that she previously knew nothing about and the lessons she had drawn from the people who live with her: “We are taught we should accept people who are different. How patronising. Who are we – the majority – to decide whether to ‘accept’ someone. We should value everyone for who they are but most of all we should learn from them.”

Ambassadors James, Michael and Nick all gave their own take on equality. Nick took us on the travels he has been on with support from his Shared Lives household, and said that for him, equality is being “different by equal”. He says, “I have never wanted to be anyone else. I am far too happy being me.”

Michael’s initial reaction to his manager asking if he could present on equality and diversity was “What are you going on about?!” Michael’s presentation echoed Clenton Farquharson’s. Clenton, Chair of Think Local, Act Personal, reminded us that the language we in the social care and charity sector can use is often baffling to people, and that we need to speak plainly and stay down to earth, if we are to be inclusive and share our power. Michael, who is a Toy Story fan, said that he could pursue his own dreams, “to infinity and beyond”, because of the quality of support he gets and his message to each delegate was to remember that:

“We are all good.

We are all special

and

We are all pretty cool, in our own way.”

If we remember that in everything we do, we won’t go far wrong…….