My autistic brother Timothy’s care home doesn’t ring me often, knowing I prefer to use email so, when its number appeared on my mobile, I wondered what had happened.
Staff said there was an outbreak of norovirus in the Surrey home; Tim had started vomiting. Staff initially assumed he had caught the bug, until they saw he was bringing up blood. He was rushed to hospital.
Next, doctors were on the phone to me. Tim had sepsis; his body was shutting down. As I am his health and welfare deputy, the medics wanted me to know my brother needed urgent abdominal surgery.
My big brother is in his late 60s and, as well as being profoundly autistic and minimally verbal, he has tonic-clonic epilepsy and intractable sleep apnoea. His big, wonky nose has a deviated septum caused by it being broken repeatedly during seizures. The surgeons estimated he had a 50-50 chance of surviving the operation.
Did we want doctors to take him to the operating theatre with such poor odds?
What if he got through surgery, but afterwards needed a stoma bag or regular kidney dialysis?
How would my very particular brother cope with an increase in intimate care, let alone endure the sensory overload of dialysis?
We decided these were all bridges we would cross if we had to; he had to be given a chance and surgery should go ahead.
I live over two hours away in London and, by the time I got to the hospital, Tim was out of the operating room. The surgeons had found and repaired the blockage in his intestine. His bowel had sealed up from adhesions that had developed very slowly after a gall bladder procedure more than 20 years before. Although he would not need dialysis or a stoma bag, he was still a high-needs patient.
Surgery: the right course?
In recovery, he looked alarming, with an oxygen mask and innumerable tubes, drains and drips festooning his body.
Sitting with this profoundly disabled elderly man, I could sense the medics’ scepticism about whether they had done the right thing putting Tim through surgery.
I showed them the website of Arthouse Unlimited, where he goes for painting sessions with other residents of his care home. There was my artistic brother, smiling happily; I hoped seeing his good quality of life would reassure them that operating had been the right thing to do.
Although surgery had gone well, Tim was not out of the woods.
He has a characteristically autistic desire for sameness that extends to his body. He will not tolerate any additions even if they would help him – he has never accepted wearing glasses, hearing aids or a continuous positive airway pressure mask for sleep apnoea. He pulled out the stitches needed to repair his mouth when his bottom lip was partially severed in a seizure-induced fall.
A plastic tube up his nose and down his throat to suction the bile from his stomach?
A catheter to help him pass urine?
Drips to administer fluids and antibiotics, and cannulas to check his blood?
All unacceptable to Tim, once the anaesthetic had worn off.
Where another patient might find pulling needles and tubes out of their body so painful it would quickly stop them from attempting it, Tim has never seemed to feel pain in the standard way or communicated it.
The complete bowel obstruction he had endured would have caused severe abdominal pain, bloating and constipation over many days, but he had not brought any of those problems to his carers’ attention. Like the rest of us, he does not like being observed using the toilet. So none of the care home staff had known anything was wrong until he vomited blood.
After surgery, the biggest problem the hospital had was keeping Tim from removing all the essential accoutrements that they had put in place. He will tolerate people examining him, taking blood and using needles, but it is a different story if they try to leave anything attached to him.
I spent days sitting next to him, trying to keep his hands from pulling at the vital leads and drips. He was fast: blink for a second and another carefully placed cannula would be torn away.
I cannot criticise the hospital for their efforts; there were two excellent learning disability nurses on staff and both of them really wanted to help. His hospital passport, with its detailed description of his sensory quirks, preferences and communication style, was carefully read by doctors, physiotherapists, nurses and healthcare assistants.
Adjustments were made. I could see that everyone was trying their hardest but, even with best practices, my brother was a very tricky patient to keep safe and well.
The relentless, rapid removal of all the attachments continued. At one point, despairing, I suggested loosely tying his hands to the bedrails only to be met with a horrified reaction and the spectre of deprivation of liberty safeguards; this legal process allows hospitals or care homes to keep someone safe by restricting their freedom if they cannot make decisions for themselves and if doing this is in their best interests. They tried putting gloves on him but that made him very unhappy.
Tim needed someone to keep him company all the time he was awake; the question was whether such a person should be funded by the NHS or social care. While that debate went on, I sat with him for as many hours as I could, hoping to keep him distracted and his hands still.
It is profoundly depressing that the latest NHS-funded national mortality review showed little improvement in life expectancy for people like Timothy who have learning disabilities and autism.
Avoidable deaths are still far too high and it does not seem like a week goes by without a news story of a neglected autistic or learning disabled person dying because of missed symptoms or delayed care.
However, my experience with Timothy showed how very difficult it can be to care for people like him who do not tell us when they have a problem and have no motivation to comply with treatment.
Difficult to keep well
Training has raised awareness of autistic behaviour; hospital passports provide vital information if they are not used as a box-ticking exercise. I sensed at the hospital a far greater sympathy, interest and understanding of autistic people than some 20 years ago when Tim had the gall bladder surgery elsewhere. The staff there had made me feel he was a nuisance and not worthy of their care and left basic needs to his key worker and family.
But, even with all these improvements in attitude, we have to acknowledge that autistic people can be very difficult to keep well.
Tim’s family and carers who have observed him for a long time may spot a symptom before it escalates too far, but even they struggle in the face of his non-standard reactions to pain, need for sameness, idiosyncratic sensory reactions and very limited communication.
It’s not always the fault of a callous or careless medical system that health problems escalate; autistic people with learning disabilities are inherently more vulnerable.
I am grateful that Tim made a full recovery and was soon back enjoying painting.
Meanwhile, his excellent carers require a sense of humour in their efforts to check his bowel habits – and all their ingenuity if they are ever going to collect the required stool sample.
