Failures of Inpatient Care

For the last year or so I have been following the remarkable blog of Sara Ryan, My Daft Life, about raising her son LB (short for Laughing Boy). When I began to follow Sara, LB (real name Connor), had run into some unexpected problems about the time he turned 18. He had been admitted to a specialist mental health unit for adults with learning difficulties and she was adjusting to the stress and distress of this situation. She dealt with this with characteristic humour and stoicism - but then last July came sudden horror - LB, who had epilepsy, had drowned in the bath in the unit. This death was preventable: an independent review has just been published here and it makes harrowing reading.  A young man, known to have epilepsy, was routinely left unsupervised in the bath, despite very high staffing levels.

There are two questions addressed by the review: the immediate circumstances of LB's death in a setting which was supposed to be safe, but also the general care he received on the ward. The report includes detailed descriptions of the unsatisfactory way that the family were treated during the time that LB was on the ward, together with a commentary from independent experts in the field relating to best practice. Some of these observations are highly relevant to LB's tragic death - the unit staff, for example, did not bother to talk to the family about the precautions that they took at home to supervise LB in the bath, and they seemed unconvinced when Sara pointed out evidence of a seizure earlier on in his admission.

Many of the observations in this report though - disputes over access and leave, confusion over the very point of admission, hideous multi-disciplinary meetings - were more general and not directly related to his death. The litany of concerns were horribly familiar to me. My daughter Julie was held in a specialist ward for adolescents with mental health problems for twelve months from the age of 14. During this time we, her family, were physically excluded from the ward, sidelined in meetings, and openly criticised. Communication with some key members of staff was very poor or non-existent. I found her ward meetings so traumatic that eventually I had to use an advocate.  It was never clear to us what progress was made with Julie's illness, or indeed what the point of Julie's admission was.  Admitted initially for an assessment period of three weeks, the admission rapidly turned into an open-ended detention.  We found ourselves in a Kafkaesque world in which we no longer had the power to remove her. When I suggested taking her home for a break one weekend I was threatened with the police (note: she was held informally, not under section).

I count us lucky to have survived this experience with our family more or less intact: the strain of Julie's admission to hospital was phenomenal, easily enough to break up marriages, destroy livelihoods, and damage siblings. It was, in retrospect, far more damaging and corrosive than her illness itself.  But we dared not complain: it had taken months to get any treatment at all, we were desperate, we had no alternatives than to put up with our brutalization.  During the whole of her admission, I made only one formal complaint (relating to the police threat), because if I had started to complain about the hundreds of incidents that happened day in day out, I would never have done anything but complain. How to fix a system that was so comprehensively broken?

That Sara and her family had to experience this, and then its harrowing denouement, is beyond tragic. Just as the hospital staff had failed to connect with the family during LB's life, their management signally failed them in death. They repeatedly wrote off his death as "due to natural causes" (as indeed, at some level, all deaths must be...) and Sara and her family have had to fight to get the results of the review published. The inquest and any other legal proceedings are still to come.