It’s still time to Transform Care

We are involved in lots of very promising work at the moment around Transforming Care: the work on which NHS England is leading to get people with learning disabilities and mental health problems or other ‘complex’ or ‘challenging’ needs out of medical institutions and into ordinary homes in the community. The programme is also aiming to reduce significantly the number of people who go into such institutions when they have mental health and other crises.

So far the various post-Winterbourne View scandal workstreams have been a great (ie bottomlessly depressing) example of what can happen when the full might of government and the wider system suddenly throws some of its best leaders, hundreds of millions of pounds and countless staff hours at a problem, backed up by all the pressure of targets and ambitious timescales: a target setting industry springs up, there are huge amounts of activity, much of it happening under almost intolerable stress, but the best spin you could possibly put on the results of several years of this is a gentle decline in the numbers of people in ATU. Some people have left, whilst others have taken their places. Where there is a bed, it will be filled. Collectively, we did lots of perfectly sensible things, but missed several essential things, without which real change could not happen.

Most importantly, ‘we’ – people working in leadership roles in the sector – turned out not be the right people to be making change: we didn’t have the courage or imagination to cede our leadership roles and power to people with learning disabilities and their families because there was neither the time nor resources to do so in our important and urgent work. Except that it turns out there was all the time in the world, because here we are five years later pretty much still on the starting line, and all the money we needed, because we have spent millions. People with learning disabilities and their families would, I believe, have led us slowly and haltingly in the right direction, with results no worse and potentially a whole lot better.

I’m optimistic that the work we are now doing with NHS England will get real results. We have had really strong interest from CCGs who are expressing an interest in the NHSE funding to demonstrate and scale up Shared Lives as a health intervention, not just for people with learning disabilities but lots of other groups as well such as people with mental health problems and older people leaving hospital. We are also developing an alliance contracting model in which we hope Shared Lives provider organisations and other like-minded providers with different models will work together, with the involvement of advocacy and self-advocacy organisations, to put a different offer in place. And we are a strategic partner in the IPC programme, with funding to support the IPC areas to think differently about providing personalised health care in general and Shared Lives specifically.

We’re doing this work because one of the intractable problems at the moment is that pared-down commissioning teams can see that new models might be better, but don’t have the capacity, expertise or relationships to develop them. Providers with good models can’t develop new models without a commissioner helping to define what is needed and in a position to purchase it. Commissioners are reluctant to block purchase care in any case: they are aware they are supposed to be helping individuals to make very individual choices. But without new models of care to choose, individual choice remains theoretical, so we have the worst of both worlds: neither old-style commissioning using its buying power to demand and invest in a better model, nor a functioning marketplace in which personal budget holders can find providers with something they want.

Our work will bring Shared Lives as a new model of care to many more people, but Shared Lives of course cannot be the only solution, and making it available doesn’t on its own shift the current power imbalances. Without changes at a deeper level, I worry that care will remain untransformed for too many people. Here are four changes it is not too late to make:

1. We need a contracting model which pays for outcomes not time, which any commissioner and provider can use. Where care is paid for by the hour, the incentive for providers is to maintain, not reduce, extremely high levels of support, even where people no longer need it and the ‘care’ is now getting the way. Our alliance contract model will attempt to build this kind of contracting model and our outcome measuring tool will be one way in which those outcomes can be measured, but models of that kind need to pushed out right across the system.
2. We need to build marketplaces in which people who are receiving care and their advocates can share limited information with suitably vetted providers, so that providers can start making offers to people who have a personal budget or Personal Health Budget, with the support of brokers. This will require investment but save more money than it costs.
3. We need to build proper scrutiny into the system, led by people and families. Rather than the patchy system of Learning Disability Partnership Boards which work only when commissioners choose to engage with them, but are essentially an optional extra, commissioners and clinicians who are currently unaccountable must be obliged to report regularly on progress to a group led by self-advocacy and families’ organisations. This will focus their minds and make failure and stasis less of an option.
4. We need ways to move resources from the state system into support for people who live in the community or with their families, to avoid the current cliff edge where a family in crisis can be told “there’s’ no money” one day, only for thousands of pounds a week to be found the day after the family collapses, to pay for institutional care. One way to do this would be for commissioners to be obliged, whenever funding is identified for emergency or medical care, to offer that money first to the existing provider, or to family carers, for them to draw up an alternative spending propose to sustain family or community care. Another would be for individuals to be able to share in savings made when a medical care package is replaced by community care, to build up a contingency fund to spend when in crisis.

The Institution Test

Four years after the 2011 Winterbourne View abuse scandal, the government is soon to publish its response to the Green Paper on transforming care for people with learning disabilities, whilst I understand NHS England will be publishing updated plans next month as part of its Transforming Care work. Meanwhile, the latest statistics show that the number of people with learning disabilities in hospitals and other institutions remains almost entirely unchanged. Some people left, but just as many were admitted into the vacant beds.

There is anxiety about closing these facilities, but the figures strongly suggest that as long as they exist, with their vacant beds needing filling to ensure that they remain financially viable, people will continue to be referred into them, however much success there is in helping people to leave.

The inertia is embarrassing for government and its partners at a national level. We need a complete rethink of the effectiveness of the ‘sector led improvement’ approach, when it comes to tackling changes which require parts of the established sector to close themselves down. However, the relevant decisions are taken locally, by clinicians and commissioners, and it is unlikely that any of them will be held accountable for the failure to achieve change. How long will we continue to see that lack of progress without concluding that the local decision making structures are the wrong ones, and transfer that money and power elsewhere?

People with learning disabilities were unheard and hidden away in Winterbourne View. They continued to be ignored in the improvement work which followed. Thousands of meetings were held, but most of them without people with learning disabilities and their families. Thousands of pages were produced, most of it gobbledegook to citizens and ignored by the professionals it was intended to guide.

One of the many frustrating aspects of the post Winterbourne work is the ready availability of community-based alternatives such as Shared Lives which help people to live better lives at lower cost, but of which professionals and families remain largely unaware. So what changes should the new plans include, if they want to end five years of failure? Here are five, based on the views I heard in the few meetings which did involve people with learning disabilities and their families:

1. It’s only through people having the chance to see and try out new models that we can challenge entrenched views and fears. We need to invest in a series of peer education programmes for clinicians, parents and people with learning disabilities. For each group, their peers are best placed to help them to see and explore other models. Where people want to try out new models, they need to be able to do so with their current arrangement held open for them in case it doesn’t work. This would all cost money, but there is a strong invest to save case, which would also lend itself to the use of social investment, paid back through the significant medium/long term savings.

2. We need to reward care providers for progress towards independence and penalise lack of progress. The current financial incentives are to keep people in the same expensive dead ends for as long as possible.

3. Money is not unrelated to power. We need to give individuals and families clearer rights to personal (health) budget control and a new right to challenge for control of resources where they and their advocates can put together a plan at the same or lower cost. At present, families are told there’s no resources to help them cope, then when that family care arrangement collapses, suddenly there are thousands of pounds a week for providers. Commissioners should have to demonstrate that they have talked to individuals and families about what they could do with any new money allocated, before committing that spend to institutional care.

4. Commissioners must be obliged to make themselves regularly accountable to local people with learning disability and families, through a new system of local scrutiny boards led by self-advocacy organisations. This would replace (or in some areas enhance) existing Learning disability Partnership Boards with a body with teeth and a new right to challenge commissioners for control of resources (building on the Localism Act which introduced a right to challenge service provision, but not commissioning). These boards could feed in to the national forum, which currently suffers from a lack of consistent local infrastructure upon which to draw.

5 People with learning disabilities from CHANGE and other self-advocacy groups made the observation that small buildings can be institutions too, because it what happens inside the building that matter. We need a new ‘institution test’ for services in this field, which could be carried out by (trained and paid) people with learning disabilities on behalf of care inspectors, CQC. Services should be obliged to demonstrate that they are not institutionalised and actively reducing institutional practice, attitudes and behaviour.

 

Shared Lives in Derby

My colleague Angela Catley of our sister organisation, Community Catalysts has kindly written a guest blog on their work developing Shared Lives in Derby, which is part of the area’s transformation of institutional care for people labelled ‘complex’ or ‘challenging’:

A couple of months ago Community Catalysts was asked by Derby City Council to help build the capacity of its in-house Shared Lives scheme.

“In Shared Lives, an adult (16+) who needs support and/or accommodation becomes a regular visitor to, or moves in with, a registered Shared Lives carer. Together, they share family and community life…Uniquely, Shared Lives carers and those they care for are matched for compatibility and then develop real relationships, with the carer acting as ‘extended family’, so that someone can live at the heart of their community in a supportive family setting”

The council and their health colleagues are busy thinking how to provide compassionate, personal and responsive support to people labelled as having ‘complex needs’. They knew that people who use their existing Shared Lives service get amazing outcomes and wondered whether, with some work, similar outcomes could be achieved for more and different people.

So much potential.

The existing scheme already has procedures and systems that govern the way it recruits, trains, approves and monitors its Shared Lives carers; matches carers with people who need support and ensures the resulting arrangements work well for everyone. What the council wanted from Community Catalysts was help to consider how these existing systems might need to change to make the service more accessible and tailored to people with much more complex needs.

Every individual is just that…an individual…much much more than a sum of their labels and experiences of serviceland. That said the folks we would love to welcome into the world of Shared Lives are well labelled with tags like ‘forensic history’, ‘sectioned’, profound disability’ and ‘challenging’. These tags hide the individual in a way that feels uncomfortable to us all right now but hopefully as we start to make the potential a reality the people will emerge from behind the labels.

To try and help the scheme build its capacity and to begin to offer a more specialist Shared Lives services we know we need to consider how we differentiate between existing Shared Lives carers and those with more specialist knowledge and skills (all without creating tension or divisions). We are busy thinking about

Winterbourne View Time for Change

The Bubb report, WINTERBOURNE VIEW – TIME FOR CHANGE Transforming the commissioning of services for people with learning disabilities and/or autism, is published today. It started as a conversation from which many people with learning disabilities and self-advocacy organisations were concerned they would be excluded. The last thing which was needed three years on from the Winterbourne View abuse scandal, was another discussion amongst professionals about how they should improve.

Social care policy moves in mysterious ways though. It became clear early on in the process that Sir Stephen and his committee were genuinely keen to engage with the views of people with learning disabilities and to take those often radical views seriously. People with learning disabilities have helped the committee to come up with some of the clearest and strongest proposals for real change since Winterbourne. In doing so they have taught us why every planning process about the learning disability sector needs their voices. Groups exclusively of professionals who do not themselves have learning disabilities have a tendency to conduct conversations about ‘difficult’ issues like the persistence of the broken and at times damaging or even fatal Assessment and Treatment Centre (ATU) model, with too much focus on the unwritten etiquette of ‘professionalism’.

We are mostly polite to each other and avoid arguments. We are loathe to suggest things that involve our fellow professionals losing face, status or their jobs. We are inclined to forgive failure, in case it’s us screwing up next time. Conversations about ATU involving professionals with learning disabilities from CHANGE and other organisations were different. People talked about their own lives and their friends’ lives. They were polite but they were clear that they were there to achieve change and that change was something you could see, time and challenge. If people made vague noises about things being important, they pressed harder for actions with names and dates attached. At times they were upset and their stories were upsetting. Surprisingly, they were rarely angry, although they had the right to be.

Sir Stephen and his group had the humility to embark on a steep learning curve around co-production with people with learning disabilities. In return, they got a better report, which recognises, for instance, that we need a closure programme just as much as an improvement programme. People with learning disabilities were also clear that they expect to be involved in decisions and to be employed in peer support, advocacy, inspection and planning roles. NHS England CEO, Simon Stevens, and other senior leaders have already met with them to explore how to employ more people with learning disabilities in NHS roles.

We support the view that we need to see closures, not just improvement of a broken and outdated model of care. The Shared Lives community can demonstrate that people with learning disabilities who are considered ‘challenging’ by some services, can often live safely and well in ordinary family homes, at a fraction of the cost of low-outcome institutional care. We are all less challenging when we are living well with people who love us. And exactly what is the ‘appropriate’ reaction to finding yourself incarcerated, without having committed a crime, in a place you hate?

Shared Lives will not be for everyone, but it is one of several tried and trusted community-based support models which everyone should be offered.

 

What if this was me?

Sir Stephen Bubb caused something of a storm when he first blogged that he had been invited by NHSE CEO Simon Stevens to convene a committee to make recommendations about commissioning new kinds of care for people with learning disabilities who are currently poorly served by ‘special hospitals’ or ‘assessment and treatment units’ of the kind seen in the Winterbourne View abuse scandal. Bubb subsequently recognised he had struck the wrong tone and subsequently made tangible attempts to engage with people with learning disabilities, including representatives of the 100 people with learning disabilities who gathered with CHANGE in Leeds, who then took their recommendations to a summit in the Autumn. Simon Stevens called those recommendations the clearest and strongest policy document he’d read thus far in his new roles and I think Sir Stephen and his committee recognised their strength as well. I had the privilege of co-working with Shaun from CHANGE as he facilitated and presented on rights at one of the committee’s meetings and the committee has said it will focus on stronger rights as being inseparable from stronger systems or commissioning.

So it is a report which didn’t have the most auspicious beginnings, and which is hardly the first attempt to make recommendations for change, after three years of well-intended work by good people, which has nevertheless failed to make any impact upon the numbers of people being admitted to institutions. But it’s a report which I believe may well make some more radical recommendations than many which have preceded it. This may be because we have had an ‘Improvement Programme’ when what many have been calling for is a closure programme.

The people with learning disabilities were certainly clear that they were calling for closure of all institutions. Shaun works on closure programmes in Easter Europe and told the committee in no uncertain terms that in his experience of being a professional who has a learning disability, it was easier to be taken seriously as a colleague and a leader in Eastern Europe, despite their recent history of institutionalisation, than the UK.

The issue of closure is fraught with risk though. What if the institutions closed and there was nowhere suitable for people to go. The long-stay hospital closure programmes of the ‘90s swept away a large number of outdated buildings, but some people felt abandoned, or found themselves living in care which felt institutional despite the smaller building. There will always be people with learning disabilities who have mental health problems, and in some cases they will need to be admitted to hospital. Two points I’ve heard recently at events have seemed to me to offer a useful way of thinking about this issue.

The first is that people with learning disabilities are, sadly

New Year – a new approach to the Winterbournes?

Two years after the abuse which was uncovered at Winterbourne View, and following a new DH report which found little real change, the 3,000 people living in ‘hospitals’ and ‘Assessment and Treatment Centres’ got their first piece of good news in some time, as it was announced just before Christmas that Bill Mumford, CEO of MacIntyre, has been appointed as the new lead for the Post-Winterbourne View Joint Improvement Programme. Bill has been visionary in helping MacIntyre to embrace personalisation and he combines a strong belief in listening, with the ability to get things done.

A swift round of inspections, soon after the BBC Panorama exposé, ascertained that the horrific abuse at Winterbourne did not appear to be widespread (although failure to meet key standards was). But whilst the most upsetting aspect of Winterbourne View was the abuse, the scandal was not that abuse could happen in a place like that – it could almost have been designed to foster inhumanity – but that a place which so obviously lacked any of the hallmarks of home or community could be considered a fit place for people with learning disabilities to live, sometimes for years on end. We thought that such places were in the history books in the UK, but for people labelled ‘challenging’, we had to face the fact that this is not so.

Whilst the programme intended to make changes did a great deal of work, the initial anger never became a movement. There was a focus on process change, rather than culture change, with local areas being asked 60+ questions about what systems and relationships were in place and how confident professionals were. The answers were published, but seemed to get us no closer to answering the question, ‘Has anything really changed?’

Bill has been a key figure in Think Local, Act Personal (TLAP), the partnership championing personalisation. TLAP’s flagship product is called ‘Making it real’, which was written by people who use services and family carers as a tool for local areas to ask, not whether professionals feel personalisation is happening, but whether change feels real to the only people who matter. It is easy to get bogged down in designing processes, guidance and systems and they are often the things that we professionals do, because we know how to do them. But when we have the humility to ask people themselves what would make change feel real, things can get a lot simpler.

With that in mind, here is my attempt to put the question, ‘Does change feel real to people in the Winterbournes?’ into ten simple challenges for councils and NHS commissioners:

1.         How are you making yourselves accountable on progress to individuals and families in your area? (eg do senior commissioners report regularly to groups of people with lived experience of Assessment and Treatment centres and their families?)

2.         How are you involving individuals/ families in designing new approaches?

3.         How are you involving providers in designing new approaches? And creating a local market place which welcomes new providers & innovators?

4.         How are you building into contracts the assumption that institutional care is short-stay – and rewarding progress towards community settings?

5.         Are you pooling budgets and jointly commissioning? If not, how are you demonstrating that your approach feels joined up to people?

6.         Are you publishing the numbers of people in, entering and leaving institutional care in your area? And do they show that your use of institutional care is falling?

7.         How do you ensure that everyone in an institutional setting has access to an advocate and an individual care plan which is regularly reviewed, with progress on those plans monitored at a senior level? 

8.         How are you judging whether institutional care is appropriate or not and demonstrating that non-institutional approaches are routinely considered, and re-considered?

9.         Do you offer significant resources to family carers who are struggling to continue to care, before spending large amounts on expensive institutional care when family care breaks down?

10.       How are you ensuring that commissioners, clinicians, service managers and practitioners have the humility to treat individuals and families as expert partners at all times?

Read our report, Closing the Winterbournes, co-written with KeyRing on our website here.

Closing the Winterbournes

The Department of Health (DH) has published its response to the Winterbourne View scandal. It contains some strong messages about removing the last institutions in the learning disabilities sector as soon as possible and uses Shared Lives in its report giving examples of effective practice.

We have been working with the DH to raise Ministers’ and officials’ awareness about the strong track record of community-based approaches like Shared Lives in helping people labelled ‘complex’ or ‘challenging’ to move out of institutions. With KeyRing, we have published today a short report giving examples of how Shared Lives and KeyRing networks can be used. The report identifies the main challenges as NHS commissioning practices and poor risk management, including a failure to work in partnership with families and weaknessess in the regulatory regime, which the DH proposes to address. The report makes these recommendations:

• All 1,500 individuals to be offered immediately a personal budget (if their care is social care funded) or a personal health budget (if funded via NHS Continuing Care) plus a brokerage and advocacy service.
• Professionals, including NHS consultants and commissioners, need to be educated about non-traditional approaches.
• Regulators to ensure that any care provided for more than a very short period of time demonstrates that it enables individuals to experience ordinary lives, unless there is a demonstrable safety or legal reason why this cannont be achieved.
• Exploring the use of payment by results and social finance investment approaches to bring alternative providers into the market, or to allow double-funding of experimental support packages for short periods.
• Raising the status of people with learning disabilities, in particular through achieving higher levels of employment including employing people in regulatory and inspection roles.

The DH report echoes a number of our recommendations and it is heartening to see that the government has pursued a strong line on this, rather than hiding behind the banner of ‘localism’. Local areas will be able to take a range of locally-decided approaches to closing the Winterbournes, but it’s right that closing them or reducing their use is not seen as optional. Full report: http://bit.ly/QTuhhG.

No more Winterbourne Views

I’ve just returned from Butlins in Bognor Regis (who says working in the charity sector isn’t glamorous?) where, with lots of help from volunteers from local and not-so-local Shared Lives schemes, a group of Shared Lives carers and people who use Shared Lives are taking a week’s break. We usually do this in Blackpool, and recently our colleagues at Aberdeenshire Shared Lives have organised weekends in Aviemore, but we thought it was time we came down South for a change.

Even Bognor, the UK’s sunniest place, hasn’t escaped the rain this week, but no one is going to let that stop them having fun. We were also doing some work. Colleagues have been hearing from people who use Shared Lives about how it has transformed lives which in some cases have been led in residential care or other institutions. Shared Lives carers are a dedicated bunch, and twenty of them crammed into our chalet for a session on personalisation and personal budgets yesterday, when they could have been enjoying some brief moments of sunshine. We discussed how Shared Lives can help people have more control and choices in their lives and I heard from some Shared Lives carers who were combining Shared Lives support with micro-enteprise approaches. In one instance, the carer offers Shared Lives in her family home and then, for people who want to move into a more independent setting, supported lodgings close by, so that she can be the consistent source of support as someone moves towards their own place.

Perhaps it was because I’d had the (too rare!) opportunity to spend time with people at the front line, and to see people with learning disabilities having fun and joining in with all the holiday activities that others were enjoying, that I felt particularly strongly when I noticed the current Mencap / Challenging Behaviour Foundation campaign to close down the remaining long stay ‘hospitals’ for people with learning disabilities and ‘challenging behaviour’.

There is no reason for these places to exist. However well run they are, large institutions will never be the best way for people to move back towards ordinary family and community life. The campaign is based on you emailing your MP, to ask her or him: Please write to the Health Secretary Andrew Lansley MP, expressing concern about the continuing existence of long stay institutions and ‘hospitals’ for people with learning disabilities and recommending that they are replaced with community-based alternatives (such as small homes, supported living arrangements and Shared Lives) as soon as possible. Emailing your MP takes seconds, thanks to Writetothem.com.

What was suprising about the Winterbourne View scandal was not, sadly, that abuse took place. When people are placed out of sight and mind, in institutions designed to contain and control them, there will always be instances of abuse. What was suprising was that such places continue to swallow up vast sums of public money, when cheaper, better alternatives like Shared Lives are well established and widely available.