Inquest closed: Connor Sparrowhawk – #JusticeforLB

The inquest of Connor Sparrowhawk (LB) has closed, with a unanimous jury finding: Connor’s death, as a result of drowning following a seizure in the bath while in a Southern Health treatment and assessment unit, was contributed to by neglect.

Connor’s family were originally told he died of natural causes. How far is today’s inquest finding from that?

— Rupert Evelyn (@rupertevelyn) October 16, 2015

Much more will be heard of the specific failings on the unit, and in particular of the management of Southern Health. So this is far from the end of the road. But it is an important step towards #JusticeforLB – the extraordinary grassroots campaign that has grown up around Connor’s family, Sara and Richard, GeorgeJulian and many others.

The consistent and persistent uncounting of people living with learning disabilities is a part of, and a reflection of, one of the greatest systemic injustices internationally.

But those statistics, and more often their absence, don’t transmit the full picture. A few of the specifics of Southern Health’s approach, as revealed at the inquest, are worth drawing out.

These are in addition to the documented failures to gather information about Connor, including from his family – such as the history of his epilepsy – and to ensure appropriate training for staff around important aspects of their job – such as epilepsy. [This was a highly costly, specialist unit for people with learning disabilities. One in five people with learning disabilities have epilepsy. One. In five.]

Withholding information

Repeatedly over the course of events, Southern Health ‘found’ new information that should have been provided to Connor’s family previously. Including sending new information unexpectedly, by courier, in the week before the inquest. This, more than two years after Connor’s death, and after numerous internal and independent reviews.

At best, the implication is a quite exceptional incompetence in the treatment of vital information about people in their care.

In addition, it was only during the inquest that it came to light that a patient had died on the same unit in 2006 – after, almost unbelievably, an epileptic seizure in the bath.

Coroner considers late disclosure concerning and will be writing to @Southern_NHSFT to seek an explanation; shd have been shared months ago — LB’s inquest (@LBInquest) October 16, 2015

Connor’s family, between their own professional expertise and the network of support, including a largely pro bono legal team led by a QC, have probably got as close to making the inquest a ‘fair fight’ as anyone ever does. One wonders what happened in the 2006 case. Which leads us to…

Adversarial approach

The UK government’s attempts to deny legal aid to bereaved families – which have been found in breach of human rights law – rest on the idea that such processes are not adversarial.

Connor’s inquest demonstrated beyond any possible doubt the falsity of such a claim. Not only was Southern Health (aggressively) represented, and from the public purse, so too were multiple members of the unit’s then staff, each individually.

The full timeline of @LBinquest is hugely revealing, but the arguments over what directions the coroner could give the jury were especially so. Southern Health’s legal team sought a set of directions to make it less likely the jury could return a verdict on neglect – including by arguing for a dictionary rather than a legal definition, which is an interesting court approach to say the least. The family’s QC, Paul Bowen, told the coroner:

PB: so you would be directing the jury unlawfully Sir, that would benefit no-one <<< @paulebowen #JusticeforLB

— Justice for LB (@JusticeforLB) October 15, 2015

Not adversarial? What happens when the family don’t have a QC to respond?

The last word – for now

In September, the United Nations made the commitment to the Sustainable Development Goals (SDGs), which provide a set of targets for human progress for 2016-2030, and importantly apply to every country of the world.

The SDGs include a requirement to disaggregate main progress indicators according to a range of salient inequalities – including those related to disability. Given that the UK’s prime minister co-chaired the high level panel that first made that proposal, let’s hope that the UK will lead the way by finally delivering on the recommendations of the government’s own inquiry on the need for much better data in relation to people living with learning disabilities. And then the rest…

Over to Connor’s family (and please read the full inquest response from JusticeforLB):

Two years and 7 months ago, our gentle, quirky, hilarious and beyond loved son (brother, grandson, nephew, cousin) was admitted to a short term assessment and treatment unit, STATT, run by Southern Health NHS Foundation Trust. Connor, also known as Laughing Boy or LB, loved buses, Eddie Stobart, watching the Mighty Boosh, lying in the sunshine and eating cake. He was 18 years old.

The care Connor received in the STATT unit was of an unacceptable standard. The introduction of new medication led to increasing seizure activity on the unit, a fact denied by the consultant psychiatrist for reasons only known to her. Connor was allowed to bathe unsupervised and drowned, 107 days later.

Connor’s death was fully preventable. Over the past two weeks we have heard some harrowing accounts of the care provided to Connor. We have also heard some heartfelt apologies and some staff taking responsibility for their actions for which we are grateful. During the inquest, eight legal teams (seven of whom we understand are publicly funded) have examined what happened in minute detail. We have had to fundraise for our legal representation.

Since Connor’s death, Southern Health NHS Foundation Trust have consistently tried to duck responsibility, focusing more on their reputation than the intense pain and distress they caused (and continue to cause us). It has been a long and tortuous battle to get this far and even during the inquest, the Trust continued to disclose new information, including the death of another patient in the same bath in 2006. Families should not have to fight for justice and accountability from the NHS.

We would like to thank everyone who has supported the campaign for JusticeforLB, and hope that the spotlight that has been shone onto the careless and inhumane treatment of learning disabled people leads to actual (and not just relentlessly talked about) change. It is too late for our beautiful boy but the treatment of learning disabled people more widely should be a matter of national concern.

18/05/2015

Uncounted: has the post-2015 data revolution failed already?

This was originally posted at the Development Leadership Program. I’m grateful to Cheryl Stonehouse for patient(!) editing.

Counting matters. As the Stiglitz-Sen-Fitoussi report puts it:

What we measure affects what we do; and if our measurements are flawed, decisions may be distorted…. [I]f metrics of performance are flawed, so too may be inferences we draw.

The UN Secretary General was told two years ago by the 2012–13 High Level Panel of Eminent Persons on the Post-2015 Development Agenda that any follow-up to the Millennium Development Goals (MDGs) had to include adata revolution.

In common with the UN global thematic consultation on inequality earlier in 2013, the High Level Panel recognised that challenging inequalities and better data collection are inextricably linked – because better data make it clear which goals are and are not being met, and because with better data we can all demand answers and action.

So the data revolution can only be about changing the balance of power. Yet much of the current discussion emphasizes purely technical reforms instead. Whilst there is nothing wrong with bringing in these new systems, such as those created by Couchbase and similar companies, it is how these technologies are used that should be considered.

I use the term ‘Uncounted‘ to describe a politically motivated failure to count that reflects power. It ignores people and groups at the bottom of distributions whose ‘uncounting’ adds another level to their marginalisation. It ignores people at the top whose uncounting hands them even greater power.

Why do we fail to count well at the bottom? This figure shows three different series for primary school enrolment in Kenya. One comes from the Kenyan National Bureau of Statistics (KNBS); one from the Demographic and Household Surveys (DHS); and one from the Ministry of Education (MOE). MOE data come directly from schools and are used as the basis for funding decisions.

Now, MOE trends tell you that progress is rapid and unsustained, while surveys look static. Which do you believe? If your children are in Kenyan state education, how well counted do you feel?

Not that survey data are perfect either. Six groups are systematically excluded from most household survey and census returns. Excluded by design are the homeless, those in institutions and nomadic populations. Ignored by undersampling are those living in fragile, disjointed households, in areas facing security risks and in informal settlements. In any research survey, there should be careful consideration of the demographic and picks for sampling. A study of various sampling methods, along with ample research into other areas of surveying, can help improve results. A large part of the populace that usually gets overlooked can then be better helped. These groups, thought to amount to around 250 million uncounted people – roughly 3.5% of today’s global population – obviously contain a disproportionate share of the world’s poorest people. They are being systematically failed even in the ‘best’ counting approaches we have.

It’s no coincidence that people in poverty are excluded. Nor is it because of technical problems that Sudan’s government in Khartoum suppresses publication of data on regional development outcomes. Or that the deaths of those living with disabilities in the UK go uncounted.

As for counting at the top, it’s equally no coincidence that high-income households are undersampled in surveys. Or that even when tax data are used to adjust the picture, major wealth – $8 trillion? $32 trillion? – remains uncounted. Or that the OECD, charged with measuring the ‘misalignment’globally between the profits of multinational companies and the actual location of their economic activity, has so far been unable to lay its hands on the necessary data.

Our choice of measure is also important – and also political. Take a look at this chart which shows how two measures, the Gini coefficient and the Palma ratio, come up with radically different answers to the same question about income distribution. Has UK wealth inequality been flat across the crisis? Or did it fall sharply, then immediately rebound even more dramatically?

The Gini coefficient embodies such strong normative views (pp. 129–144) that it doesn’t capture well changes in the top 10%, or in the bottom 40% where most poverty lies. It is very encouraging (to me!) that instead the Palma ratio has featured in recent drafts of the post-2015 indicators.

The Palma – which expresses the ratio of income shares of the top 10% to the bottom 40% – also embodies a normative view, but it’s absolutely explicit about it. The chart of UK wealth distribution across the financial crisis shows why the Gini gave rise to so many congratulatory headlines about stable inequality, and why they’re wrong.

What might an actual ‘data revolution’ look like? If there’s no recognition of the political nature of the problem, then we’d be fooling ourselves to expect any great change: the same people and the same things will continue to go uncounted.

What’s noticeable in the discussion so far is that there has been a great deal more attention paid to the uncounted at the bottom than at the top. There’s been precious little mention of Piketty’s proposal for a global wealth register, for instance, or of specific measures that would eliminate anonymous company ownership, require states to exchange tax information with each other (think SwissLeaks), or multinational companies to publish country-by-country reporting (think LuxLeaks). Yet if we don’t start counting things that make elites uncomfortable, then we’re not doing it right.

Data reforms are, broadly, welcome; but a revolution remains far off. People and things go uncounted largely for political, not technical reasons.

That’s why a data revolution is so badly needed. And revolutions aren’t technical: they’re political.

23/02/201525/04/2019

Uncounted: People with learning disabilities in the UK

It’s possible that there is no more excluded and marginalised group worldwide than people with learning disabilities. In fact, people with a physical or learning disability may often find that they aren’t able to get a job because of this factor. As a result, they are more likely to research into “how much is disability insurance” so they are able to make ends meet when it comes to supporting themselves. This can have a massive impact on their life, especially if they aren’t able to do what other people can do. There are certainly much more harshly and deliberately victimised groups in many places – but for a single group, neglected to the point of rights abuse on a global basis…?

It’s probably not useful to speculate about this anyway, and certainly not to set up any group against any other (and in no way is this speculation intended to downplay other global dimensions of exclusion such as gender and caste).

But here’s the point of thinking about it. If you wouldn’t immediately dismiss the suggestion as ludicrous, then it’s worth thinking about two things:

Why it might be that the underlying conditions to accept such a pattern of rights abuse might exist, systematically, across all sorts of societies with all sorts of histories and at all sorts of per capita income levels; and
Whether the exclusion of people with learning disabilities globally has anything like the level of public awareness, attention, or outrage, that it should.

Needless to say, if you buy the premise at all, then these two points have a common causality: the simple lack of importance given to the lives of people with learning disabilities.

Uncounting in the UK

This blog, if it’s about anything, is about the way that the marginalisation of some groups at least is exacerbated by being uncounted. Uncounted, so denied a full role in the statistics upon which policy decisions are made; and in the data which forms the base for political accountability.

Consider one of the world’s richest countries, and one with a long and proud history of universal (universal) health provision: the UK.

Here’s a little context from the last major study:

On average, men with a learning disability died 13 years earlier and women with a learning disability died 20 years earlier than the general population.
37% of deaths would have been potentially avoidable if good quality healthcare had been provided.

Periodically, the exposure of a particularly terrible case of abuse results in commitments to progress. The major recent example is the BBC’s exposure in 2011 of systematic abuse at the Winterbourne View hospital.

Aside from specific legal consequences, this triggered the ‘Concordat‘ – “a programme of action to transform services for people with learning disabilities or autism and mental health conditions or behaviours described as challenging”, signed up to by everyone from the Department of Health and Local Government Organisation, to the Care Quality Commission watchdog and major NGOs in the sector such as Mencap and the Challenging Behaviour Foundation. A particular aim was to move everyone who could live in the community – expected to be the vast majority – out of such institutions, with widespread closures expected.

A major component of the Concordat commitments was to better counting. Specifically, the Department of Health committed to:

Within getting into details, these commitments were both welcome in themselves, and indicative of the failure to count to that point.

Lack of progress report

More than two years since the Concordat – and getting on for four years since the motivating scandal broke – what progress has been made?

Earlier this month the National Audit Office published an important report on just this question, examining “the challenge faced in delivering key commitments in the Winterbourne View Concordat, the extent to which these have been achieved, and the barriers to transforming care services for people with learning disabilities.”

There has been a more or less complete failure to achieve the main objective of allowing people to move out of Winterbourne View-type settings and back into real lives, and/or not to enter such settings in the first place. To do what the Concordat aimed for:

a rapid reduction in hospital placements for this group of people by 1 June 2014. People should not live in hospital for long periods of time. Hospitals are not homes.

As the report notes, in 2012 data was a fundamental barrier to progress. Despite some important advances, the findings on the present position are damning.

NHS England lacks adequate and reliable data to monitor progress. In 70% of the 281 case files we reviewed at visits to 4 hospitals, there was at least one error in the June 2014 quarterly census data submitted to NHS England. Official data for our cohort of 281 patients showed an average stay of 3 years and 10 months. The actual length of stay was 4 years and 3 months in their current hospital.

Available statistics are not accurate either about the numbers of people in institutions, nor about even the most basic features of their experience.

This is a repeat, not a typo:

Available statistics are not accurate either about the numbers of people in institutions, nor about even the most basic features of their experience.

It’s difficult not to think that we (still) don’t bother counting, because we (still) don’t care enough to do it right.

A changing landscape?

I can see one reason to be cheerful. Sad to say, it doesn’t come from the big NGOs who are part of the Concordat. Their reaction to the NAO report didn’t seem to include taking any responsibility for its abject failure thus far, nor any suggestion of how their call for change this time would deliver any more progress than all the previous ones. (There’s a whole separate piece to be written about the ability to hold governments accountable of large NGOs with an existential dependence on public funding for service provision.)

No, if there’s a bright spot here, it comes from a quite different direction. The Justice for LB campaign, coming out of the completely unnecessary death of 18-year-old Connor Sparrowhawk in ‘care’, has developed into a grassroots movement of people living with disabilities and their families. [Full disclosure: Connor lived across the road and I love these guys.]

Justice for LB responded to the NAO audit of the Winterbourne Concordat with their own self-audit, which is (surprisingly!) a thing of beauty, anger and hope. The potential for the ‘LB Bill‘ to make it into parliament after the general election is real, and exciting.

Perhaps the best way to stop being uncounted is to demand it yourself – but of course if it were that easy, nobody who wanted to be included would be left out in the first place. Uncounted is a political phenomenon, and Justice for LB is a most welcome, and deeply political response.