Horror

After last night’s BBC Panorama expose I looked back at what I wrote here eight years ago, after Panorama secretly filmed abuse in Winterbourne view.  I could cut and paste much of it into a response to this latest misery: so little has changed. I could also of course look further back – to the Mansell reports, to Goffman, and furthe into the history of asylums and how places of supposed safety become places of horror. Once again we have universal revulsion, leaders committing to action and promises that things will change. It was the gap between what everyone in our sector had agreed was necessary and what collectively we seemed able to change which led me into thinking and writing about the visible and invisible asylums which we still build, maintain and whose existence still seems to shock us, though they hide in plain sight.

The reality is that the public eye will move on and the 2000 people living in places like Whorlton Hall will find themselves back in the shadows, whilst non-disabled people in high-paying jobs return to talking about the challenges of commissioning, shared commitments to quality and the importance of building senior relationships, as if this week had highlighted some minor technical challenges, instead of abuse, ‘learning disability’ given as a reason not to resuscitate people, solitary confinement and unexplained deaths.

No. None of us are doing nearly enough, including the charity sector: a glance at social media makes plain the gap between the measured responses of charities and the raw anger and grief of families who have lost loved ones, or switched off their TVs fearful for a son or daughter locked up miles away. Outside of Twitter and one or two organisations like Learning Disability England, the voices of people with learning disabilities themselves were absent: not called upon to speak as experts in the programme, nor the news items that followed it. It is no coincidence that people with learning disabilities are so frequently abused, and that they are, as Philippa Bragman of CHANGE once pointed out to me, the only group of people routinely excluded from what should be their own civil rights movement.

After Winterbourne I worried that if there was a mass closure programme, nothing adequate would be put in place of the so called Assessment and Treatment Units, where there is often little visible assessment or treatment. I thought that NHS commissioners might at last turn to models like Shared Lives with less timidity: when things are this bad, surely it’s time to try something new? Whilst Shared Lives grew for many groups, for this group of people with learning disabilities held most deeply within the medical system, it didn’t happen. And here we are again. (Of course – this is just the latest incident to be exposed. How much abuse has taken place in the last eight years with no hidden cameras there to witness it?) The ease with which the system reverts from this public crisis back to uneasy stasis is terrifying.

I’m convinced we need a closure programme: nothing else will create the urgency to start new community services. Our statement with Voluntary Organisations Disability Group and Learning Disability England set out three things that would take power and money away from the class of leaders who have consistently failed to use it well and put it in the hands of people and families. Those local and national leaders must:

  • Make themselves accountable to people with learning disabilities, autism and mental ill health, and their families, by creating formal relationships with local user-led and carers organisations and advocacy services.
  • Ensure everyone using long-term NHS care can access a personal health budget and an independent advocate to help them find and use new forms of community support to help them get out of hospital.
  • Work with high quality voluntary and community sector providers to redesign care around the person with a clear expectation that everyone can live a good life in the community.

We know that no single model has all the solutions and heaven knows the charity sector is far from perfect. Though Shared Lives is consistently rated as the safest and best form of regulated care, there have been incidents of abuse in its long history. But if, as organisations providing care for public benefit not for profit, we don’t believe that we can do better, what are we for? It is criminal that the NHS remains content to buy ‘care’ for thousands of pounds a week from organisations which clearly have no business in people’s lives, whilst its ‘too busy’ to work with us and other community services who have shown we can offer infinitely more human care. It is not even as if there is a financial challenge: the reason there are so many private sector organisations in this most complex and important part of the health service is because they are charging exorbitant fees. I read that the owners of this latest failure made £40m last year: their investors will not forfeit a penny of it for the misery they caused. What else could that money have been spent on?

As with Winterbourne View, it was the abuse which was shocking but what we should be focusing on is the model of care we saw which fostered that abuse. Any commissioner paying thousands to that organisation , who had spent five minutes in that place, talking to those staff, should have been able to spot that they were in a place which couldn’t possibly offer a good enough life to people: an institution, where people were forced together behind locked doors, shut away from friends, family, life, staffed by people with the most basic understanding of humanity. In a service which will have claimed to be specialist, expert, necessarily eye-wateringly expensive. The majority of staff working in medical care are good people, but we would not accept this rate of failure, nor such limited ambitions for happiness, for any other group of people. Those good staff will be good staff in less institutionalised services, and would find those roles infinitely more fulfilling.

If we want change to happen this time, we need to put power in the hands of the people who are genuinely calling for it: people with learning disabilities and their families. I don’t trust anyone else.

5 thoughts on “Horror

  1. simonstevens74 May 23, 2019 / 11:12 am

    Alex, what makes you any different? You peddle the idea that people labelled as having learning difficult do not deserve independent living but should be forced to live with white middle class families who control their behavour 24/7 and its cheap.

    The BBC […deleted by blog owner] will expose the poor quality of warehousing as they see no value in disabled people in a political environment where carers are king and the government allows carers to abuse their ‘loved ones”.

    On Saturday night, the police walked into my home demanding to know where my carer was!

    Share lives is a cheap and nasty warehousing product for people who are considered by society as undeserving of inclusion.

    • Alex Fox May 23, 2019 / 2:54 pm

      Thanks for taking the time to comment Simon. I hope you’re well. No one is or should be forced to live with anyone in Shared Lives and the Shared Lives carers I meet are always proud of the growing independence of the people they support. Shared Lives is not for everyone, and is not perfect as I say in the blog, but thousands of people who have lived experience of the model see it as a much more positive experience than the way you describe it. Many describe feeling included and independent for the first time.
      I deleted a line in your comment which I felt was off topic and not compatible with the values of this blog – if you’d prefer me to delete the whole comment rather than edit it, do please let me know.
      All the best, Alex

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