We went on holiday last week. Starting from the battered position of getting the ‘updated’ version of the OCC ree (I refuse to call this a report as it bears no resemblance to anything I’d call a report) at 5pm, the day before we left. The issue of records cropped up again when we were away. Relating to whether LB bit his tongue or his lip in the unit.

This is a nonsensical question that underlines the importance of families documenting interactions with health and social care professionals meticulously. And even then, how their records are not really records.

In a complete panic, back in May 2013, I emailed the STATT manager to say that LB had had a seizure and accidentally typed lip instead of tongue. This typo has become part of the official record and has seeped into both the original Verita report (extract below) and the documents for the coroner.

It was a typo. One I realised and corrected the following morning, first thing, in a follow up email to the manager who’d replied to say he had contacted the consultant.

This email didn’t make it to the ‘official record’.

The lip/tongue question remains an issue. A confounder in getting accountability for LB’s death. [Yes, he died. He drowned. You fuckers].

This raises so many questions about what families can do to make sure their records, their version of events, are treated with respect and fully engaged with. To avoid being dismissed, misrepresented or ignored.

I typed lip instead of tongue that evening because I was so intensely distressed by the thought LB had an unwitnessed (unwitnessed??) seizure in that place. It was a simple typo.

Back from holiday. Sitting at the computer on a sunny Sunday afternoon to gather more evidence that fell outside the official Sloven/OCC record, I can’t help asking;

Really? Are you really making us go through these hoops?

Why?