Human rights abuses of people with learning disabilities

The Joint Committee on Human Rights (JCHR) published their report on the detention of young  people with learning disabilities and/or autism in mental health hospitals and so called Assessment and Treatment Units. The committee of parliamentarians ‘”condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”.’

The government’s inspectors CQC come in for criticism for not consistently enough spotting human rights abuses where they are happening and the committee recommends more surprise inspections out of office hours and even covert surveillance. While CQC clearly made and continues to make mistakes, any public service which relies on covert and surprise inspections to keep people safe is fundamentally broken: the inspectors, even with more than their currently limited resources, will never catch every abuse, if the model is itself abusive. CQC itself says, ‘Services where people stay for months or years, where people are located away from their communities, where there is weak management and where staff do not have access to the right training and support, are more at risk of developing cultures where abuse and human rights breaches take place.’

Our thematic review on restraint, segregation and seclusion’s interim report came out in May 2019. The review has further emphasised the poor environment, high numbers of staff without support or training, and punitive cultures that can develop in these services.

The committee gets tantalising close to recognising this, recommending new legal duties on NHS Clinical Commission Groups and local authorities to ensure the right services are available in the community and making it harder to use the Mental Health Act to detain people with learning disabilities. The most important insight is the ‘the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances’, from early family concerns around the behaviour of a son or daughter as they reach puberty. The family tries to advocate and fight for support. They remain the source of nearly all care, but are excluded from professionals’ meetings. ‘The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.’ This state-inflicted trauma leads to an emergency response, which gradually becomes open-ended ‘physical restraint and solitary confinement.’

Meanwhile, NHS England announced the extension of personal health budgets, already used by 70,000 to take control of their care package, to more people with mental health problems. As I’ve argued here before, personal health budgets, combined with significant investment in voluntary sector advocacy and planning organisations, and in not-for-profit community support organisations, offer a solution to the horrors contained in the JCHR report.

Everyone who has a learning disability, who is admitted into long-term NHS care, must be offered a personal health budget and an independent advocate to help them or their family to find and use community support to help them get out of hospital.

The rules which place decision-making power in the hands of a small group of clinicians must be changed, so that a designated decision-making circle of support, including the people who know the individual best, collectively share responsibility for protecting the individual’s human rights and maximising their life chances.

And every family whose support for their son or daughter is considered at risk of breaking down, must be offered a personal health budget of at least the equivalent value to the cost of the public service alternative, and support to spend it on support which can sustain family life, or provide a community-based alternative.

We could make these changes today.

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.

Time for user-led inspections?

Obviously the quality of NHS care is in the spotlight now that the Francis report into appalling failures at Mid Staffs Hospital has finally been published. But social care is also going through some quality changes. The Care Provider Alliance (which I’m chairing for the year) came together with The Nuffield Trust last week, which has been asked by the government to explore the idea of developing a new approach to quality ratings within social care. We used to have them of course: the inspector, before it became the Care Quality Commission (CQC) and its role diminished to inspection of safety and compliance with essential standards, used to rate services on quality. In Shared Lives, we were very keen on this, because were top of the class with 35% excellent, 95% good or excellent. In truth, star ratings were a blunt instrument, but much mourned when they were abolished by the Dept Health.

Things have changed since then. We have moved on from believing that a visiting inspector can comprehensively judge the quality of a service, towards believing that the key issue is the outcomes being achieved for each individual using a service and that best people to judge the achievement of those outcomes are the individual themselves and their families or advocates. After all, many people are now individually choosing their service using a personal budget and in many cases taking personal responsibility for buying that care via a Direct Payment, so ensuring they are involved in monitoring its quality is the next logical step (see below for more on this).

There was a fairly intense discussion: the CPA brings together the representatives from the vast majority of the independent care provider sector, including care homes, home care and community services, of all sizes. However, I felt there was a fairly broad consensus from CPA members on some key points:

  • There is a need for quality ratings, which are fair, accurate and proportionate
  • There is a need for a strategic overview and leadership from DH to ensure that the Quality Ratings review, NICE Quality Standards, CQC’s activities, PQP & NHS Choices, Healthwatch, the TLAP programme and its quality strand are brought into alignment as part of a strategic vision.  There is currently confusion.
  • The starting point must be the experience of outcomes of people using social care – the kinds of outcomes aimed for will often be the same across different settings, even if the approach to achieving them will differ.
  • We do not believe we can have a single health and social care rating system without adding to confusion and measuring the wrong things for social care in the wrong way.
  • The new system must Continue reading

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.

Countdown to the White paper

Despite stories in the press about delays to the White Paper, as far as we can tell, it remains on track for publishing in ‘the Spring’. ‘Spring’ in civil service speak lasts well into June, of course. We’ve got a fair idea of what’s going to be in it, because the government involved lots of people from the sector in drafting the early ideas and strongly welcomed the ideas we came up with around prevention and the help which people and communities need to tackle problems like isolation, which services cannot fix.

As well as setting the tone for the whole sector for years to come, a good White Paper needs one or two eye-catching initiatives, which capture the imagination as well as the spirit of the policy changes. The impact of complex policy changes can be difficult to grasp by those not immersed in how social care legislation and regulations work, but who nevertheless have strong views on what good care, support and inclusion looks like. Sometimes relatively small-scale changes can exemplify the broader intentions.

So whilst I could take a good guess at the range of policy shifts we’re likely to see in the White Paper and I’m not expecting to be surprised by its ‘narrative’, here’s a rather specific idea which I’ve no reason to think is anywhere in it, but which I think should be considered:

Close as many as humanly possible of the remaining 100+ ‘hospitals’ for people with learning disabilities.

These are the institutions, often ostensibly used for assessment of people considered ‘challenging’, which were made infamous by the BBC Panorama expose of Winterbourne View. The recent CQC inspections of these institutions which followed that exposé  are not finding that all are havens for abuse –far from it. There will be many dedicated and skilled staff working in such places – I used to be a care assistant in a residential home for people considered challenging and I came across no abusive staff and plenty of entirely lovely people working long hours for little money.

But CQC has been finding a significant number of places which are completely unacceptable: buildings which smell of urine; services which lack the proper safeguarding procedure and protection for people’s rights; people with no care plans; worryingly lax use of restraint. The reason such places should not exist is not, however, that they are places where abuse is more likely, although I believe that the risk of abuse increases when people are managed as part of a large group and spend little time outside of an institution. The reason such places should not exist is that, even if they are run brilliantly, a 20 or 30 bed ‘hospital’ in a non-residential area with locked doors and the conflicting support needs of large numbers of ‘challenging’ people, may be able to deliver warmth, food and shelter, but can never deliver the basic quality of life which we take as read: real relationships with people who aren’t paid to be with you. The chance to be a part of a community. ‘Ordinary’ home and family life. You’re much more likely to learn the skills and attitudes you need to take part in ordinary life when you’re living in an ordinary family home. Although the stated purpose of care offered in these ‘hospitals’ is to assess people’s needs, in reality, some people spend months or even years living there because no alternative has been found.

But Shared Lives and other community-based forms of support are in almost every area and have a track record of supporting people considered challenging (see Alan’s story). They are not even more expensive than these institutions – commissioners often make huge savings through helping someone switch to Shared Lives. The heavy lifting of closing long stay institutions has already been done for us. There aren’t many left: let’s make this White Paper an opportunity to close that chapter of history for good.

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.

A box of buttons

The other day I met the outgoing and much respected national Director for learning disabilities at the Department of Health, Anne Williams, who told me a story that made us both a little tearful.

Anne had met a lady who’d lived for countless years in a long stay hospital for people with learning disabilities. She had no speech, never went out and shrieked whenever someone approached her. The one thing she liked was her box of buttons which she sat and ran her fingers through.

Anne met the lady after she’d left the hospital and was living in a small shared home. In a short space of time, her life had improved immeasurably. She was able to interact with people, no longer shrieking in distress when approached. She had used the bus for what people would have assumed was the first time, if it hadn’t been clear that she remembered how to use it, probably from memories of going out as a child. Rather than receiving whatever was on the hospital menu that day, she was able to tell Anne what she had chosen for her lunch by taking her to her fridge and laying out her choices on her kitchen table.

To think that, needlessly, that lady’s life had, for decades, been reduced to a box of buttons, was what we found so moving about that story.

Now there are few long stay hospitals. Whilst most are staffed by good people doing their best, the Winterbourne scandal Continue reading

Panorama expose #2

Thanks for the comments to my previous blog. There’s been lots of reaction to the programme, including learning disability organisation BILD calling for an urgent government review of the legislation and inspection process (see the article in today’s Society Guardian).

Another article in the Guardian, on ‘mate’ crime, shows that it isn’t only institutions which can be breeding grounds for abuse. But I agree with Mencap that there is no place for locked ‘hospitals’ housing 24 people. The £3- 3500 per week spent on housing patients in an environment with no attempt to provide any semblance of ordinary life, staffed by unskilled, unqualified workers, could have purchased fantastic community based care. By way of comparison, Shared Lives costs around £250- 450 per week. We have great case studies of people who have been labelled ‘challenging’ when living unhappily in institutional care thriving without incident in a Shared Lives setting. For instance, South Tyneside recently saved £50k per year on the cost of one ‘challenging’ individual’s support.

This morning we hear that four people have been arrested. Why only four? Continue reading

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