Pulling lines and dirty diagnoses

A court of protection hearing has been taking place this week to determine whether it is in the best interests of 17 year old William Verden to have a kidney transplant. Without the operation he will die of a rare kidney disease in 12 months. William does not have the capacity to make this decision. The NHS Trust oppose the transplant. The court will decide if he can have the operation.

I want to chew over a few bits from the hearing here. Release rage through my fingertips. Give my old keyboard another pounding. I mean death really ain’t a decision you want someone to make for you. How could it not be in your best interests to have a potentially life saving operation?

[William is represented by Emma Sutton, Serjeants Inn. His mother Ami McLellan is represented by Tor Butler Cole, 39 Essex Chambers. George Julian is live tweeting the hearing. You can support George’s work here.]

The opposition to William having the transplant seems to be made up of a set of overlapping, baffling (non) areas/arguments:

Dirty diagnoses. Autism, learning disabilities and ADHD are inherently life shortening diagnoses. The ‘heady combination’ of William’s autism and ADHD ‘intertwined’ with his kidney condition generate layers of dodgy complication. He is very different ‘to me or you’.

Functioning age. William is the age of a 3 year old.

Control. William is out of control. He doesn’t respond to reason. He has a history of pulling out tubes. He would need to be sedated and ventilated for up to six weeks after the operation to allow the new kidney to graft. Two security guards are assigned to him in hospital.

Spiralling risks. The need for excessive sedation and ventilation brings new risks. While there is little evidence about the risks of more than 2 week sedation/ventilation for people ‘like William’ we can assume these will be worse than the risks for people not like him [anecdotally]. Intensive care is a terrifying place. William would either be restrained or drugged for so long he would ‘very likely’ end up with psychiatric harm.

Sleight of hand stuff. There is often dodgy dancing in these cases involving NHS trusts. A not so nimble flipping of arguments to score points. When discussion turned to adjustments that could be made in the process to support William, the trust counsel said it would be discrimination if he did not receive the same treatment as other patients. When the care plan which states his choices about things like the numbers of people present in the room was not followed, it was presented as helping William to learn to be more flexible. [‘Sleight of hand’ doesn’t capture these examples. When you think that the healthcare people with learning disabilities often receive is often poor, the suggestion that a trust is grabbing serendipitous opportunities in a dialysis suite to help a young man to learn to be more flexible is grotesque.]

Emma Sutton and Tor Butler Cole carefully dismantled the barricade of these nonsensical, ‘insane’ arguments over the last two days in court. For example, the fabled line pulling. [Which he didn’t do]:

He’s never actually pulled a line out but sometimes we need to do surgery quickly so it’s a problem if he did. 

No-one has seen him pulling it out but it’s unusual to go through as many lines as quickly and in a boy who tends to pick at dressings, I don’t think it’s unusual to think it might relate to the fact he’s had three lines in relatively short order.

From an autism point of view, his inability to tolerate rapid changes that will happen, so behavioural risk of pulling out lines and make treatments impossible to complete.

We learned how the things that get William’s goat (like being called the wrong name or having people too close) have been ignored and led to him being restrained. ‘Being restrained by two security guards is nothing like a prolonged period in paediatric intensive care,’ said one consultant. Underlining the ‘insanity’ of the arguments presented in a court of law.

‘Where did the evidence that William is functioning at the level of a 3 year old come from?’ asked Emma S. ‘Oh. I don’t know. From local expert records I think’.

The carelessness and casualness with which medics circulate empty, damaging statements is breathtaking. While ignoring William’s and his mother’s expertise. Despite limited evidence to draw on, the potential negative outcome of this operation for William was feasted on like a tabloid celeb secret.

A brighter picture emerged. Care has been taken to support William to understand his healthcare needs, the reason for his treatment and the transplant operation. He understands he needs the operation or will die [I know]. Tor BC and Emma S continued to deconstruct the illogical, baffling arguments of the Trust counsel that William was somehow so random, so off the scale of anything approaching healthcare, so inhuman that he should be denied the opportunity of a life saving operation.

When one witness said it was in William’s best interest that he have the transplant, she double checked he’d factored in the the 50% risk of recurrence. And took the opportunity to reiterate the pulling the line line. The clinicians and experts had got together to be creative about William’s care plan. A heart soaring moment that the trust counsel described as ‘quite unusual’ and ‘effectively a hot tubbing of all disciplines’. 

William had dealt with his shitty hospital treatment well and came across as stoic about having to have further medical treatment. When the chips are down and you’re facing death, people tend to. Dr Y dismissed William’s understanding of death in move of a breathtaking brutality.

I would like to know how William makes sense of death in comparison to Dr Y, the judge, or any other 17 year old. I suspect he’s got it as nailed as any of us. Particularly given it is closer to him right now.

The day ended on a kick ass note. Dr C finished his evidence reflecting on how impressive it is to see how much progress William has made: ‘not withstanding impact of environment on him and impact of his treatment… There’s something around everyone trying to give him the best chance.’

William’s mother was last to give evidence. I can barely imagine the horror of sitting through this shit show of ignorance, prejudice and assumption, with your child’s life at stake.

She described William as ‘very active, loves golf, any activity he can do, anyone has any jobs doing he’ll do it, he likes to be busy, and just full of life, he’s full of energy, he’s such a beautiful boy, beautiful inside and out. He definitely is a handful.’

Instead of pulling lines and dirty diagnoses, let’s focus on this point. Beautifully made.

3 thoughts on “Pulling lines and dirty diagnoses

  1. A mother of ‘a beautiful boy both inside and out’ , ‘sitting through this shit show of ignorance, prejudice and assumptions ‘to protect his right to live. Elsewhere a Government statement suggests that taking a legal route to inquest may prolong the distress of a family.

    People who pursue Justice from a Public organisation describe how they meet aggressive and disrespectful obstruction at every stage. First from the organisation concerned.and subsequently in ‘complaint’ and legal processes where they are forced to relive fear, pain, grief and guilt over and over again.

    When the LA’s knuckles were barely rapped for disabling my daughter/son through years of neglects – at the same time ignoring and then disrespecting me and my pleading, I shrank back from reliving the horror of it. For the reliving of it, in the retelling of it, ripened a torture that is unlike all other.

    Yet I fought on. We fight on.

    We will not say – ”our love – and this pain – is too much”.

    It is not wrong to fight on for equal rights and equal justice for our beautiful boys and girls.

    It is wrong that we have to..

  2. I followed the COP hearing closely and was struck by the changing “facts”. Initially it was said William would need to be intubated and ventilated for 6 weeks but when this was questioned, it became 2 days.

    The comments of people who had never met William, regurgitating the comments of others as clinical fact in case where a life hangs in the balance is shameful.

    Ultimately it boiled down to medical professionals believing that a neurodivergent person is less deserving of the care that would be automatically given to any other child. And not worth the extra care and adjustments they may dare to require.

    • Yes, Not only in NHS. This also thrives within Local Authorities. Effect is same. It is destructive and disabling. Once family, usually mum, ruffles professional feathers and gets bad press – that reputation lingers on and can infect all. Every subsequent communication passes through that filter. Team members who offer alterative experience can suffer penalty of isolation; silenced; Can leave the team and then the profession. Where ever people need essential support and have had to challenge to secure it, people suffer. Some die from it. ‘Othering’ is not just a concept – it is a disease,

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