Full disclosure

There is something so wrong with a system that allows a young man with learning difficulties die of complications arising from constipation. Richard Handley went for a poo on average less than once a week in the 42 weeks running up to his death. When he was finally admitted to hospital they operated and removed 10kg of faecal matter.
I remember a conversation with a friend when she registered her shock that ‘care providers’ record bowel movements in people’s notes. Well not so big disclosure, we also record them in our lovely daughters diary. We, parents of a daughter with profound learning difficulties and low muscle tone, know the dangers of bowel obstruction and know that it can lead to premature death. Not only do we note bowel movements, we also record their consistency, the food she eats, and her use of regular laxatives and enemas. Too much information I hear you cry, well more, we, her family and her carers don’t just rely on notes we also talk in sometimes graphic detail, about the consistency and size, sometimes using words like explosion or at the other end of the spectrum, pellet. Sometimes we apologise to our lovely daughter for talking of such things, but not as much, as we would have to, if we ignored the issue and talked only of the weather and the colour of her clothes.
I have laughed in the knowledge that comes from shared experience with my fellow mothers of young people with special needs as we have sat in restaurants and over a bowl of pasta discussed the bowel movements of our offspring. But I would not be laughing now were I in the courtroom listening to this sorry tale, nor would I be laughing if I was one of those charged with supporting Richard Handley and failing, but most of all I would not be laughing if I was his mother and had trusted those people to look after him and keep him safe.

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