Oliver McGowan was 18. He lived with cerebral palsy, epilepsy, autism and a learning disability. He died in November 2016 from a hypoxic brain injury after being given the antipsychotic olanzapine at Southmead Hospital in Bristol.
Oliver had reacted badly to antipsychotic medication before. His parents repeatedly said that he must not be given it. They said it in advance. This was not something they claimed afterwards, when they were trying to understand what had happened.
Oliver was saying it too.
Oliver did not have a diagnosis of psychosis or any mental illness. He had been taken to hospital because he was having seizures—not for treatment of a mental illness.
And still, he was given olanzapine.
And still, he was given olanzapine.
The first inquest concluded that the care leading to his death was “appropriate.” A later independent review found that his death was “potentially avoidable.”
When I read that information, I cry.
I cry for that family. For that mother who watched and fought, and still the worst possible outcome happened. Her son, her unique, beautiful and very loved son, died and she couldn’t stop it.
I cry because I recognise that.
I cry because I fear that.
Every time we are admitted to hospital and one of my children is misunderstood, or I am read as difficult, I fear that. I read Oliver’s story and remember each time my own child looked at me, in pain and fear, and quietly asked if she was going to die and begged me not to let her.
And I feel angry.
So, so angry.
His family told them he could not have that medication, and still he got it.
My body remembers every damn time I have told a medical professional something important and it was not listened to. Every time that has nearly ended very, very badly for my child.
And that anger is because I know it is real.
Because I suspect that for every case that makes the news, there are many we never know about.
Angry because I am scared.
Scared that if we stop watching and alerting, something will happen. Scared because even when we do watch, even when we do speak, sometimes it is still not enough.
I can imagine how incredibly hard that time in hospital must have been for Oliver’s family. The fighting. The watching. Not knowing whether they were pushing too much or not enough. Knowing something was wrong but being unable to make the people with the authority act on what they knew.
Potentially avoidable!!!!
I want to scream: why don’t we listen to parents? Why, why, why?
And I can only imagine how those words feel for his family. To hold all of that after holding the watch for so long. To have spoken before it happened, and then to see what happened softened and defended afterwards. To have to use a Freedom of Information request to obtain drafts of the review into their own son’s death. To still be waiting while actions remained incomplete.
I cry for them. I cry for me and my children. I cry for all the others who hold this watch without always having the power to act on what they know, or to save the children they love.
I also have a profound respect for Oliver’s mother, Paula McGowan, and what she has done with that watch.
She has taken the worst possible experience and used it to try to protect other families. To try to make sure this does not happen to someone else. Training now carries Oliver’s name and is legally required for staff working in CQC-registered services.
And she keeps going, despite the appalling truth that it does still happen.
The most recent LeDeR figures found that 39% of the deaths of adults with a learning disability reviewed in 2024 were avoidable. That is down from 46.3% in 2021. It is still nearly double the rate in the general population. It still means more than a thousand people in a single year. Imagine if one of those was your loved one?
Even when the system knows this happens, even when it knows the risks, even when there is so much evidence showing the consequences of not listening, it still does not reliably listen or learn.
The wider evidence for this pattern belongs in the book. Here, I only need to say that Oliver’s story is not the only one. There are far far too many more.
And until the system truly learns, our watch is harder than it needs to be. Because we are watching not only our child or loved one, but the systems meant to protect them. The places where we should be able to hand over the watch without fearing that harm may come from the very people to whom we have entrusted it.
In July 2026, the report examining deaths during 2024 was published with the announcement that it would be the last national LeDeR report of its kind. The work is to be absorbed into a new dataset that is not yet in place.
The system that counted these deaths has stopped counting.
The families have not been allowed to stop watching.
Post-Responsibility Trauma (PRT) and Sentinel Adaptation are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses
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