I’m going to repeat an old story here.
For two reasons. Firstly, because it feels timely and appropriate in the week the CQC published their Deaths Review. Secondly, because as Steven would put it, “it’s big massive news”.
In January 2014, I decided to use a chunk of Steven’s compensation money and took him to a private health clinic up near Bakers Street. For about six weeks he had been howling in agony, clutching his side and begging anyone to take the pain away. For six weeks we were shunted backwards and forwards between the GP and A&E as neither seemed prepared to take his agony seriously. A locum GP even tried to pass it off as ” imagined pain” as Steven was bent double on his floor. A referral was made for an ultra sound but nothing happened.
Imagine the shock when the doctor at the clinic, after doing a full body scan, announced that Steven’s liver was failing. His body weight was producing a fatty liver and could prove fatal. The only smidgen of relief from the consultation came when the doctor agreed that the medication was probably the primary cause.
In 2006, Steven weighed 13 stone. A paediatrician put him on Epilem Chrono to help with his anxiety. In 2008, after transition to adult services, the psychiatrist put him on risperidone. A serious anti psychotic to manage the existential crisis of becoming an adult. By the time Steven came out of the ATU, the dosage of risperidone had been tripled.
When Steven was weighed at the private clinic, his weight was 29 stone 2lbs. 16 stone weight gain in 8 years. He was dying. Death by medication. And nobody gave a toss because Steven has a learning disability.
Between 2006 and 2014, I must have seen more dietitians than is possible to see. Kept ring binders of food logs. Spent a fortune in personal trainers. But all along, I knew deep down that the weight gain had little to do with Steven’s food intake. Nobody would believe me. Nobody would acknowledge the glaring link. Even after the liver diagnosis, the GP’s first reaction was another dietitian referral. The psychiatrist was completely disinterested in starting a programme of medication reduction. Out of desperation, one day, I contacted the expert psychiatrist from the High Court case and begged for his help. He did and without the treating psychiatrist’s support we started the long process of weaning Steven off. By this time, he was taking 4mg per day, so a .5 reduction every three months seemed endless.
Almost immediately, the weight started to fall off. Steven last had a risperidone tablet in April. There has been no change to his anxiety or behaviour whatsoever. He got anxious on the medication: he gets anxious off the medication. He’s broken stuff on the medication: he’s broken stuff off the medication. That’s life. That’s autism. That’s being a human being.
Today, the support workers weighed Steven at swimming. He weighs 19 stone. Still too much but a loss of 10 stone in 2 years. We can only hope his liver is repairing itself.
If Steven had died, there wouldn’t have been an investigation. It would have been put down to “natural causes”. All the health and social care professionals in Steven’s team unwilling to make the link between the medication and the weight gain.
On the day back in 2006, the paediatrician prescribed that first tablet, Steven had just thrown a carton of apple juice over him. If I saw him today, I’d find something more lethal to throw at him. His apathy, like several professionals that followed him, nearly led Steven to be a CQC statistic.