We will learn no others

“Friendly and loveable” Ben King died aged 32 after spending over two years at Cawston Park Hospital last year. Ben’s was one of three concerning deaths since 2018. The hospital was in special measures at the time of his death and has now been closed. According to the charity Inquest, the inquest into Ben’s death found that the breathing problems which ultimately killed him, were down to a preventable health condition, caused by obesity which had got out of control when his day support and activities were cut. When he died, there was not even any plan to help him lose weight, despite multiple hospital trips. He was also hit, hours before his death, by hospital staff, who failed to take his condition seriously enough to get him life-saving treatment. So much about this story is familiar from other tragedies: the fuller life led with his Mum, and then, when his Mum could no longer care for him, the decline through unhappy care services, behavioural issues, institutional care, poor medical regimes and diet, and in the end a bereaved mother campaigning for the truth and some semblance of justice.

It is the failures and abuses immediately surrounding his death which shock most: a staff member ‘struck’ him twice when he was already dangerously ill (I can find no mention of a police investigation). Another ignored him as he died.

But in every case of this kind, it is the long-term, systemic failures which should make us most angry: the inability of expensive services to help Ben live as well as he had done with his Mum, who would have had a fraction of the state resources that were spent on Ben’s care. The budget ‘savings’ made by withdrawing a fitness regime which would have kept him alive. The increasing use of powerful drugs to keep him sedated, with little apparent awareness of how dangerous they were.

The inquest makes clear links between Ben’s hospital admissions and bad choices made by highly-paid experts. Why were those links made by none of those experts? The longer someone remains in a medicalised environment, suffering repeated and worsening crises, the easier it becomes for professionals to see that person’s medical and disability labels, their ‘challenging’ or ‘complex’ nature, as the reason things are going wrong for them, rather than decisions the experts are making, which come with all the reassuring rigmarole of diagnoses, risk assessments, multi-agency planning, case notes. Few if any would have a clear picture of how much better his life had been just a few years before. Did his mother’s concerns become easier to dismiss? Some professionals are prone to talk of families’ (particularly mothers’) ‘over-protectiveness.’ And of course, the more unprotected their son or daughter appears, the more protective they try to be. Services, however, are never described as ‘under-protective’, even when their complacency leads to people’s deaths.

As someone becomes de-humanised, their life diminished, their choices and dreams shrunken, their medical issues more enthusiastically examined and labelled, their distress pathologised, then failures or abuse by individual workers become more likely. There will have been skilled, compassionate people working at Cawston Park Hospital. Its parent company has a social media feed full of lovely-looking care and activities (no mention I could see of Ben or the inquest). But there is a long history of organisations which charge thousands of pounds for their expert care attracting people who are thoughtless or cruel, or who become so.

Another young life lost. Another grieving family. No doubt even now, someone well-paid to provide “strategic leadership” to the services which failed Ben and many like him, will be saying that ‘lessons will be learned’. But we remain hell-bent on ignoring the lesson that disabled people and their families have learned in their thousands for centuries: there are deadly risks and harms inherent in incarcerating people out of reach of family, friends and community. For as long as we continue to ignore that lesson, we will learn no others.

Wrong, dangerous – and deadly?

The latest annual LeDeR report covering 2018-2020 gives what Prof Chris Hatton of Manchester Met Uni describes as “comprehensive, and exceedingly grim” statistics on the deaths of people with learning disabilities. In his twitter thread, Chris describes the shockingly high proportions of people who died who were being given anti-depressants, anti-psychotics, and combinations of powerful drugs of those kinds. Anyone who has worked with people with learning disabilities in health or social care services, will recognise the routine way in which people who have at some point been described as ‘challenging’, ‘complex’ or having ‘behavioural difficulties’ end up on cocktails of powerful drugs, and then more drugs for the side-effects of those drugs (an average of over 6 drugs per person for those who died according to LeDeR). This often goes on for years or decades, with no obvious sense of what the drugs are currently doing for the person, or what would lead to doses being reduced.

Ethnicity, gender and type of disability label all have a bearing on how likely you are to be prescribed various kinds of psycho-active drugs. These statistics of course hide the individual people and lives they analyse, and the Bristol University team who produce the report make a point of starting each annual report with a few stories, like Angela’s:

Angela was funny and had a good sense of humour. She could say a few words and knew a little Makaton. Angela used to enjoy lots of activities including swimming, climbing, bowling and walking but she was less active as she got older. She liked to visit garden centres and listen to classical music.

As we know, “There was a significant increase in the number of deaths at the peak of the COVID-19 pandemic from March – May 2020.” This fact raises many unanswered questions about the extent to which people with learning disabilities were protected and well cared for during the pandemic, and their vital services given all of the safety equipment, support, testing and access to vaccinations which they should have been at an early enough stage. We know that some, perhaps many people with learning disabilities, were wrongly given ‘do not resuscitate’ notices by doctors who believed that they were justified by their disability. The LeDeR report found that 3/4 of those who died had a ‘DNACPR’ notice, with factors such as the person living in a service rather than at home making a big difference to the chances they had one. 6% (up from 4%) of notices for those who died were demonstrably wrong; these will not include incorrect notices put upon people who did not then die.

But it is the correlation between extremely high medication and deaths which Prof Hatton draws out which has been haunting me. As Chris puts it, “Everyone knows this level of medicating people is wrong and dangerous. And it continues.” As NHS England puts it, these drugs, if wrongly administered, can cause not just long term health conditions (such as those associated with weight gain caused by drugs) but other ‘serious’ health problems, yet “every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.”

The number of things that ‘everyone knows’ are wrong, harmful or downright dangerous, which the NHS, social care systems, and learning disability services and their commissioners carry on doing anyway is a long one. I have argued before that as a public service sector, we have become adept at blaming people who use services for the things we knowingly do wrong: they are problematic, challenging, complex, and we are doing the best we can with limited resources. We are fluent in the language of risk and risk management, but wilfully blind to some of the most important risks (in my book I argue that when we say an organisation is risk averse, we usually mean it’s averse to some risks but stunningly complacent about the risks which matter most to people themselves).

But the implication of the facts set out by LeDeR are that the medicalisation of learning disability and the resulting over-medication of people who if they didn’t have learning disabilities would be treated very differently, could not just be harming, but in some cases, killing people. The NHS and government need to be able to answer that question with certainty, and if it is the case, the response to it cannot just be another ‘improvement’ programme.

Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.

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.

Giving parents with a learning disability a chance

BBC Radio Four’s Women’s Hour featured Lisa, a parent with a learning disability and her Shared Lives carer, Dawn, from Shared Lives South West. The article was followed by a debate about the issues. Lisa is parenting her daughter successfully and now needs relatively low levels of support: raising the question of why Shared Lives support for parents with learning disabilities is not the norm. Listen to the article here: http://www.bbc.co.uk/programmes/p00xxjp3

Three questions

The closure of day centres  – and other ‘building-based’ services – continues apace. I subscribe to a popular email group run by the Foundation for People with Learning Disabilities (http://www.choiceforum.org) and there has been a spate of messages recently from family carers and professionals raising concerns about this. There’s even a report of an area opening up a new day centre for people with complex needs, having closed the old one and decided that alternatives weren’t working.

The debate about day centres quickly becomes ideological and couched in black and white terms. One side believes that the alternative to day centres is casting people with learning disabilities out into a solitary existence in a ‘community’ that turns out to be at best elusive, and at worst, openly hostile. The other side believes that day centres are evidence that segregation and institutionalisation are far from the memories they should be.

I’m reminded of the anecdote a former colleague told me of a visit by an ageing member of the House of Lords to the day centre for older people my colleague was running. It became clear that Lord X might himself be in the early stages of dementia and also that he was having a very enjoyable time, chatting with people his own age. My colleague said to Lady X, as she was thanking him for his hospitality, that his Lordship would be welcome to drop in and use the facilities whenever he wished. “That’s awfully kind of you, but my husband is already a member of the most exclusive day centre in the world”.

Most of us belong, or would like to belong, to clubs and groups of one kind or another. The difference being, that most people have choices about what to belong to and to opt out of. Clubs and groups which want us as – usually paying  – members, have to design themselves around our changing wishes and needs. We often get to contribute as well as to recieve something. And we get the option of spending time on our own as well, when we wish.

I believe that the painful and often angry debates about building-based services could nearly always be avoided if, instead of asking “Should this day centre close?”, decision-makers always asked everyone concerned these three questions: Continue reading