Tom's story

When my son was 17, my family and I spent a year under siege. It took a year for us to get him the help he desperately needed. We spent a year with our bedroom door locked; the kitchen knives hidden away, Louis’s elder siblings kept out of the way.

When he was finally admitted to hospital, he was diagnosed with schizophrenia and we thought things would get better. When he left hospital, he received a depot injection of medication, and eventually starting doing odd jobs. But when the arrangements for receiving his injection changed, he dropped out of this routine.

In December 1998 my wife and I were told that Louis had jumped 80 feet from the railway bridge on our road onto the tracks below. He spent a year in re-habilitation, and began to make progress; taking low doses of medication and beginning to stand with the aid of leg irons and a stick.

But in June 2002, my wife noticed that Louis was becoming mentally ill again. I had – naively – assumed that getting help would be easier second time round. I was wrong. It took until December 12, 2002 before Louis was admitted to hospital.

It took months for Louis’s records to arrive, and even when we supplied his
history, it made little difference. Louis began to talk to trees, foul his bed, scatter food around, leaving the front door left open when out, turn off the freezer, turn his pictures to face the wall, pick up oddments of rubbish to put in his pocket, sit in the middle of the road in his wheelchair in the dark and rush out in his wheelchair into the middle of a busy intersection.

We were promised an informal assessment but Louis was out when the team arrived. But when he was finally assessed, the medical team described him as an angry young man and concluded that the fact that his uneaten meals were scattered around the floor “no worse than an untidy student’s bedsit”.

I believe Louis could – and should – have received help under the Mental Health Act long before he was Sectioned. Most of the professionals we have met have been very sympathetic. I have tried to be reasonable in my fight to get the right help for my son, but it was not until my wife wrote an impassioned letter that we seemed to achieve a real breakthrough.

We are appalled at how badly the system has let Louis down. On every occasion when an assessment was imminent and we thought Louis knew he would be admitted, our unspoken fear was that he would not stay alive until then. Although our frustrations pale in comparison with what Louis has experienced, I would not wish them on anyone.

Rethink’s Reaching People Early campaign has the slogan: “When your car breaks down, you can get help within 60 minutes. When your mind breaks down, it can take 18 months.” I am asking for a full inquiry into how the NHS has failed my son so that no-one has to wait that long for help with severe mental illness.