ML - A Life and Human Rights

A View from Cowley

Mark Neary

Earlier this week I noticed a link in my Twitter feed to a Court of Protection judgment from 2014. I remembered the case and the terrible feeling of fear I felt after reading it. The case was about a 25 year old autistic dude ML and the conflict over a best interests decision between his parents and the social worker.

The professionals wanted to admit ML to Bestwood hospital which was described as a centre of excellence. The social worker felt that an ABA technique called an Extinction Burst would be useful. Some autistic commentators familiar with this practice describe it as wanting to cure someone of their autism. I googled the phrase and came across an article that compared a toddler's temper tantrum with the distress experienced by an autistic person during a period of sensory overload. The social worker also used two other motives to detain ML (coincidentally both were used in Steven's detention in 2010). They were to tackle what she felt as family limitations in helping ML realise his potential and issues around lack of variety in his diet. The consultant nurse, Susan Freeman, enhanced her claim by painting ML and the family in the most negative of terms. I don't want to give her any more traction by repeating her claims but they are all in the full judgment below. Suffice to say, the professional's presentation of ML was so familiar to me that I wondered whether it came from a template from a book called: "The Dark Arts of Preparing Your Case for the Court of Judgment".

Reading the judgment requires the theme tune to Jaws as its soundtrack. The sense of impending doom in each paragraph is overwhelming. The family talk about a previous hospital admission that left ML severely traumatised. His support worker talked about the close, loving relationship he has built with ML. The day centre that ML attends spoke of the slow, painstaking work they were doing with ML and the positive outcomes achieved so far. Needless to say all these positives were shot down by Susan Freeman in the most aggressive manner because she was certain that she knew best. There was a terrifying section in the judgment when Freeman accuses the family of not taking ML's challenging behaviour seriously. (Once again, the same accusation was thrown at me). Pitifully but truthfully, the family's only response was "we don't keep records at home". Bang. Those six words reveal the power dynamic and how normal family life is so under threat. The family were seen as lacking, distrustful and negligent because it hadn't occurred to them to include lever arch files of behavioural logs into their family routine. The outcome of the hearing is only heading one way.

Before the final decision is announced, Freeman introduces one last chilling twist. Expressing a lack of confidence in the family being able to withstand ML's treatment, she requests the judge orders a caveat that the family are unable to apply for discharge, regardless of what they witness. There is no timescale offered for ML's detention. It is for an unlimited, unspecified period. And no plan should the treatment plan not work. The judge accepts this restriction to the family's input. The ruling is handed down. ML is taken from his home, family and friends and dispatched to Bestwood to broaden his diet beyond jam sandwiches.

That was 2014. We don't know what has happened to ML since. Did he ever return home or is he still there.

Two things we do know:

2 years later in 2016, Bestwood received a "requires improvement" rating on every single category they were inspected on by the CQC.

In 2017, the hospital was sold to St Andrews Healthcare, rebranded and given a new name. We know about St Andrew's track record in holding on to people way beyond their time.

There is something about the ML case that encapsulates so many problems within social care. Most families will recognise and have experienced some, if not all, of the aspects of the case. If anything, the gulf between the families and the professionals is probably even greater now than it was in 2014. The power dynamic is certainly more stark these days.

The judgment is a very sad read. It's a terrifying read. Most families will read it and imagine what might happen to their life if someone like Susan Freeman knocked on their door. Not unexpectedly, human rights aren't mentioned at all in the judgment. They don't figure on the radar because ML, and by default, his family are seen as not quite human. The things that glue families together like love, duty, shared experiences are seen as irrelevant, almost laughable. Freeman's total certainty in her rightness chills the bones. Her dismissiveness of a family's history is shameful. Ego wins over love.

ML - I hope you're home. I pray you're okay. I hope you've had help dealing with the trauma inflicted by your treatment and the desire to make you fulfill someone's arbitrary idea of your potential. I hope you're still alive.

I hope.