Out of sight – who cares?

The latest report on inhumane care for people with learning disabilities in modern day Britain, this time from care inspectors, the Care Quality Commission, could not be more damning:

“we found that time and time again people were not getting the care they need, when they need it. We have attempted to reflect what we saw and the many examples we found of care that was undignified, inhumane and that potentially breached people’s basic human rights. We are grateful to those who have shared their experiences with us, and hope this will go some way to illustrate the trauma they have been through when they have sadly been failed by the system that was established to care and protect them (whether due to hospital admission from lack of crisis care, segregation or inappropriate use of restraint). Cumulatively, the evidence that we have gathered points to a system where people with complex needs fall through the gaps. We cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives.”

They were not talking about exceptionally bad services: this is their verdict on what is considered normal for an entire group of people. Their recommendations are sensible. And they will make little impact. The report itself acknowledges the long line of similar reports going back decades, all with clear pictures of failings that are ‘shocking’, despite each having the same overall message. So the CQC’s entirely sensible recommendations about improving accountability, oversight, training, assessments and even their own inspections, will not prevent the next such report. This is a report about people with learning disabilities, not by them. It is about how to improve models of care which actively harm people, with ‘care’ that in many cases would be considered criminal if it was for any other group of people. This report should have one recommendation: close these institutional services and replace them with the models which CQC itself acknowledges can work. As the report itself says,

Another alternative is possible.

The question asked by the report’s title remains unanswered: Who cares enough to bring that alternative from the realm of the possible into reality?

In the meantime, the reports pile up, along with the wasted days spent out of sight, and out of mind.

The right support at the right time

This is a guest blog from my colleague Ali Hall who works in our development team building new support for young people in transition to adulthood:

As 2017 draws to a close, I’m three months into my new role with Shared Lives Plus, helping local services develop Shared Lives for young people in transition. It’s been an enriching experience – a bit like walking in to a room full of people who think the same way I do, and quietly realising “So this is where you all are”.

The Care Quality Commission (CQC) recently published a report on mental health services for children and young people which says “The system as a whole is complex and fragmented. Mental health care is funded, commissioned and provided by many different organisations that do not always work together in a joined-up way. As a result, too many children and young people have a poor experience of care and some are unable to access timely and appropriate support.”

This fairly accurately sums up my experience of working with and within health, community and youth services. I’ve found that even where practitioners, including myself, can identify possible mental health concerns for young people, we may not know enough, we may not want to assume, or we may not have the time or the knowledge to adequately help. As CQC say this means we “may not be able to help children and young people access the right support at the right time.”

So, the big question is: who can? This is traditionally where family and close networks come in. But what about those people who haven’t got this kind of framework in place? This is exactly the kind of scenario where community cohesion, common sense and having a go-to person can provide a bridge to services.  It’s also where invested adults with an overview and understanding of that young person can help navigate the system and secure the support they need. Perhaps just as crucial, though, is applying these principles to prevention and recovery for people who have mental health issues of all kinds.

Shared Lives is one of these common-sense approaches.  It’s a model of care where adults and young people aged 16+ who need support and/or accommodation move in with or regularly visit an approved Shared Lives carer, once they have been matched for compatibility. Together, they share family and community life.

People make friends, get involved in clubs and activities, volunteer for causes and go on holidays. Feeling settled, valued and developing a new sense of belonging improve young people’s mental health – those intangible senses we have of being connected to others, of Continue reading

Let’s get started

The government’s care inspectors, the Care Quality Commission, have just published their three year report on social care, having now inspected all care services in England under their new regime. They found that whilst three quarters of care services are good or outstanding, a fifth of all services need to improve and that rises to a third of nursing homes, which care for people who have the most complex needs. There has been a lot of focus on the role that funding cuts play in this, which is undoubtedly significant: commissioners in some areas are trying to pay so little to their care providers that it is hard to see how those providers could even meet their legal duties such as minimum wage. There needs to be more money put back into the system to avoid catastrophe and the government needs to stop diverting any new social care money into a focus on saving acute hospitals, as has just happened with the Better Care Fund.

But there are other lessons to learn. In this report as in all recent ones, CQC has found that smaller services are more likely to be good than bigger ones. People want to live in somewhere that feels like home, but huge care homes are still being built and registered for older people, and ‘units’ of ten or more beds are still be developed for younger disabled adults.

Staff turnover in social care is over a quarter a year and rising. The model of recruit quickly and cheaply hides huge re-recruitment costs and must contribute to the failings that the inspectors find.

Shared Lives is an approach in which Shared Lives carers are recruited slowly: a three to six month approval process. Shared Lives feels small and homely because it only takes place in the Shared Lives carer’s family home, and the surrounding community. So it perhaps shouldn’t be surprising that CQC once again find that Shared Lives outperforms all other forms of care. Shared Lives carers are trained and paid, and the scheme which recruits, matches and supports them also costs money, but this model is not more expensive: it is consistently significantly lower cost.

Shared Lives is not perfect everywhere. It is coming under increasing pressure from commissioners desperate for even greater savings, who don’t understand that the time and care taken in setting up and supporting Shared Lives is crucial to its safety and success, and also the reason it costs less overall. Some Shared Lives carers are being put at risk of burn out as they are expected to care 24/7, again with risks to people’s wellbeing and ultimately much higher costs. But the lessons from this model are clear: invest time and money in the conditions for success, not managing failure. Focus first and foremost on a good life if you want good services. Ensure rules and regulations are there, but in the background when they’re needed, not the whole focus of everyone’s time and energy. Think small and personal, not big and cheap. 

The government is about to consult on social care. This cannot just be a discussion about what social care costs and how to pay for it. It has to be a discussion with what that money is spent on, starting with the ambition to offer Shared Lives to everyone who want it. Almost every area now has a local Shared Lives organisation to build on. Let’s get started.

How to succeed

Chief Inspector of Social Care, Andrea Sutcliffe writes a fantastic blog every couple of weeks about her travels around the world of social care. This week, Andrea wrote about speaking at the our Parliamentary reception for Shared Lives. Andrea says, “I am very happy to give my support to a model of service that is truly person-centred and can achieve such great outcomes” and goes on to quote from our event and inspections of Shared Lives schemes. We all loved this blog: read it here.  Thanks Andrea!

Three divides

There’s plenty of talk of integration when it comes to services, but what about the national bodies which regulate and support those services? Here are three divides which don’t make sense to me: what could we do to integrate across them?

  1. The divide between inspecting the quality of services and helping those services to improve. CQC inspects the quality of services but has no remit to support services to improve, for which a struggling service would need to approach one of a range of agencies which are largely non-statutory and less securely funded, such as the Social Care Institute for Excellence (SCIE) and Think Local, Act Personal. Shouldn’t we do both at once? Failing NHS trusts and GP practices can access some funded improvement support, but social care services cannot.
  2. The divide between inspecting quality and ‘economic regulation’. CQC inspects the NHS and social care services for quality. Monitor is the economic regulator for the NHS. There is no equivalent to Monitor in social care, other than a limited CQC duty which affects a few of the largest social care providers if they get into serious financial difficulties. It’s not possible nor sensible to look at quality and financial viability in isolation from each other. NHS Trusts which are driven only by balancing the books will make all the wrong decisions when it comes to achieving outcomes and real value for money, which can only be done by taking a holistic view of the local health and care system.
  3. Regulating providers but not regulating commissioners. Both used to be inspected, but now it’s only providers. The problem with this is that some of the issues which inspectors find with providers are actually problems with what commissioners decide to buy and how much they are willing to pay for it. There have been many abuse scandals, but have any commissioners been held to account for years of squandering public money buying no-outcome, dangerous care, rather than using that money to develop services which help people to live well? When services are found to be failing, commissioners have as much of a role in fixing the local system as providers.

At the moment it’s possible for large amounts of money to be spent on separate inspections of the quality and of the finances of the same NHS trust. Further separate inspections could find social care services failing. None of those inspections can contribute to fixing the problems they find and they will not even consider the role commissioning of health and social care is playing in creating pressures and gaps, nor will they have much to say about the way in which failings in one part of the system are creating problems in another.

We need a more holistic picture than that.

There may be a case for merging some of these bodies. In the meantime, there is certainly a case for them working as closely together as the law allows.

Are we ‘warehousing’ older people?

A Daily Telegraph report based on recent care home research says that smaller care homes are being replaced by what it describes as large ‘care warehouses’ after a wave of closures. Smaller care homes are finding it increasingly hard to cope with cuts and don’t have the same economies of scale of larger operations, nor the property market investment strategies of the really big corporates.

What the Telegraph report didn’t mention is that the last annual CQC State of Health and Care report was unequivocal in drawing a correlation between better care and smaller settings:

CQC data
CQC data

This isn’t to say that every small care home is great and big ones awful: there are examples of larger services which people enjoy living in and in which they receive great care. But it does suggest that, despite the particular quality challenges faced by smaller homes (eg it’s harder to cope with staff turnover in a small team; there is no corporate training/quality regime to draw on etc), there are elements of providing a caring, safe and perhaps above all, homely, environment, which are inherently easier in smaller settings.

This is certainly the experience of the smallest regulated care settings: Shared Lives schemes, which are limited to a maximum of three people and are homely by virtue of the support offered taking place in an ordinary family home. CQC also says that Shared Lives outperforms even the smallest end of the care homes sector:

CQC data
CQC data

There has been lots of talk (including recommendation 7.3 in the NHSE report by Sir Stephen Bubb), post-Winterbourne View abuse scandal, of CQC refusing to register new institutions for people with learning disabilities to safeguard safety and quality, because the evidence is clear that these kinds of facilities are fundamentally incompatible with community living.

If that’s true for people with learning disabilities, why is it not even discussed when it comes to building ‘warehouses’ for older people?

Stop press: Shared Lives outperforms all other forms of care

News just in today, is that care inspectors CQC have published their annual State of Health Care and Adult Social Care in England. For the first time they have disaggregated Shared Lives from their ‘community care’ category and we’re glad they did: Shared Lives outperforms all other forms of regulated care, including other forms of community care. This is also consistent with the report’s finding that smaller settings are generally better than larger settings. Here is table 2.10. Shared Lives results are in yellow and include what I think is the report’s only 100% compliance statistic for adult social care:


CQC inspections
CQC inspections


Panorama’s Castlebeck expose

I’m sure anyone who watched Panorama tonight would have been appalled at the systematic and violent abuse of adults within a Castlebeck facility supposedly offering care and rehabilitation for people with learning disabilities and complex needs. The Castlebeck ‘hospital’ (Winterbourne in Bristol) secretely filmed is a locked unit housing 24 adults in conditions in which there was nothing for them to do except wait for the next round of abuse from staff, which included assaults, cold fully clothed showers, water poured on people outside during Winter and constant threats and intimidation. Arrests have now been made. This ‘care’ cost the taxpayer around £3000 per patient per week. Inspectors, CQC, failed to intervene despite three allegations of abuse from a senior nurse and a recent conviction for a staff member caught abusing a patient. They have apologised and propose to carry out 150 unannounced hospital inspections. Ironically, Castlebeck boasts it is the winner of the HSJ/ Nursing Times Top 100 Healthcare Best Employers award 2010.

Deeply depressing. How many Winterbournes are out there amongst the remains of the UK’s long stay institutions? No form of care and support is immune from abuse, but the Castlebeck horror story illustrates the real risks in institutional care which is locked away from view and makes no attempt to value people as individuals or to help people aspire to ordinary, independent living. The perceived risks of support being led more by individuals themselves and of community-based support such as Shared Lives, should be balanced against the protection they offer from institutionalisation.

This shocking case also illustrates the need which is common across social care – for everyone to have an independent advocate to whom they can have access whenever they want and who will speak up for their rights come what may. Advocacy simply isn’t part of the current system and, at a time when care and support is supposedly being reformed to give people ever greater choice, the decreasing availability of support to make choices is a gaping wound in our sector.

Something that has left a really bad taste for me though, is not just the failures of the social care sector, but also the failures of the BBC team Continue reading