107 Days #Justice for LB
Today is the final day in the #Justice for LB campaign, and I wanted to add my voice to this wonderful and inspiring campaign.
LB stands for Laughing Boy, the name Sara Ryan used for her son Connor Sparrowhawk. Exactly a year ago today, after 107 days in an Assessment and Treatment Unit (ATU) in Oxfordshire, Connor passed away following an epileptic seizure in the bath. This was a completely avoidable death.
This story is one that touches me profoundly because my own son George spent 16 months in an ATU. He is autistic, non-verbal and also developed epilepsy when he was 15. At 16, he displayed increasingly challenging behaviour and eventually had a mental health crisis, becoming catatonic. He went from home to emergency respite, to our local hospital in Kent. At 16 he was too old for a children’s ward, but not old enough for an adult ward (they start at 18), so the search was on for a mental health inpatient place for a teenager. After many meetings, consultations, phone calls etc, it became clear that there was no provision nationally for adolescents with George’s combination of autism, severe learning disability and mental health issues, and nor was there any support available for him to stay either at home or nearby. Many places were looked at and discounted – we were informed by some professionals that ‘there are private places who would take him in an instant, but I wouldn’t want my child to go there’. So eventually it was agreed that he would go to an NHS adult ATU specialising in Learning Disabilities, a drive of an hour and 45minutes away.
It is easily the hardest thing I have ever had to do – let strangers look after my disabled son, who I had looked after for 16 years and who was even more vulnerable because of his mental illness.
While the ward setting was far from ideal (adults, no education, older people, hospital, his siblings couldn’t visit, they also had building work going on for a while), we were extremely lucky to find a group of people who not only cared for him, but cared about him. On my visits I saw firsthand how hard they worked, answered all their questions as they tried to understand him and together work out how best to help him. We went into something called the Care Programme Approach (CPA) and our first meeting was focussed on how to work towards discharge – very reassuring after all the crisis meetings and the realisation that he would have to leave home.
It was while George was an inpatient that the BBC Panorama programme was broadcast about Winterbourne View.
After about 6 months he was declared fit for discharge, and again we entered into the ‘finding a place for George’ challenge. We lived in Kent, so he was admitted from there, but while he was an inpatient we moved to Cheshire – cue arguments over who would fund his next placement, never mind where it would be! To cut a very long story short, I am happy to report that George was eventually discharged to a residential special school not too far from my new home and has since moved into an adult home even closer. The delays took an extra 10 months, during which time he was on the ward unnecessarily. If you have read any of the publicity surrounding Winterbourne you will be aware that it is at this point that he could have been stuck more or less indefinitely, with no one willing to use their budgets to move him from the hospital to a social, community based setting.
So today I am counting my blessings, and my heart goes out to Sara Ryan and all the other families still living my worst nightmare.